FHIR IG analytics| Package | hl7.fhir.us.uscdi-scd |
| Resource Type | ImplementationGuide |
| Id | ImplementationGuide-hl7.fhir.us.uscdi-scd.json |
| FHIR Version | R4 |
| Source | https://build.fhir.org/ig/hlnconsulting/uscdi-scd-ig/index.html |
| URL | http://hl7.org/fhir/us/uscdi-scd/ImplementationGuide/hl7.fhir.us.uscdi-scd |
| Version | 0.1.0 |
| Status | draft |
| Date | 2026-09-11T00:10:30+00:00 |
| Name | USCDISickleCellDiseaseIG |
| Title | USCDI + Sickle Cell Disease Implementation Guide |
| Realm | us |
| Authority | hl7 |
| Description | The USCDI + Sickle Cell Disease Implementation Guide (USCDI-SCD) defines FHIR profiles, extensions, value sets, and code systems to support the exchange of clinical data for patients with Sickle Cell Disease (SCD) in alignment with the United States Core Data for Interoperability (USCDI) and US Core 8.0.1. |
| CapabilityStatement | ||
| hl7.fhir.us.uscdi-scd#current | uscdi-scd-client | USCDI-SCD Client CapabilityStatement |
| hl7.fhir.us.uscdi-scd#current | uscdi-scd-server | USCDI-SCD Server CapabilityStatement |
No resources found
Note: links and images are rebased to the (stated) source
Generated Narrative: ImplementationGuide hl7.fhir.us.uscdi-scd
Language: en
The official URL for this implementation guide is:
http://hl7.org/fhir/us/uscdi-scd/ImplementationGuide/hl7.fhir.us.uscdi-scd
The USCDI + Sickle Cell Disease Implementation Guide (USCDI-SCD) defines FHIR profiles, extensions, value sets, and code systems to support the exchange of clinical data for patients with Sickle Cell Disease (SCD) in alignment with the United States Core Data for Interoperability (USCDI) and US Core 8.0.1.
FHIR
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},
"name": "Example BiologicallyDerivedProduct — Antigen-Matched pRBCs",
"description": "Example SCDBiologicallyDerivedProduct representing extended antigen-matched,\nleukoreduced, sickle-cell-negative packed red blood cells used in Maya\nJohnson's exchange transfusion. Demonstrates antigen match extension and\nprocessing documentation.",
"exampleCanonical": "http://hl7.org/fhir/us/uscdi-scd/StructureDefinition/uscdi-scd-biologicallyderivedproduct"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "Condition"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "Condition-maya-johnson-voc-encounter-dx.html"
}
],
"reference": {
"reference": "Condition/maya-johnson-voc-encounter-dx"
},
"name": "Example Condition — Acute Vaso-Occlusive Crisis (Encounter Diagnosis)",
"description": "Example SCDConditionEncounterDiagnosis for an acute vaso-occlusive pain crisis\ndocumented during Maya Johnson's emergency department visit.",
"exampleCanonical": "http://hl7.org/fhir/us/uscdi-scd/StructureDefinition/uscdi-scd-condition-encounter-diagnosis"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "Condition"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "Condition-maya-johnson-scd-diagnosis.html"
}
],
"reference": {
"reference": "Condition/maya-johnson-scd-diagnosis"
},
"name": "Example Condition — HbSS Sickle Cell Disease (Problem List)",
"description": "Example SCDConditionProblemsAndHealthConcerns instance representing Maya Johnson's\nprimary HbSS sickle cell disease diagnosis on her active problem list.\nDemonstrates SCD genotype extension and dual coding (SNOMED CT + ICD-10-CM).",
"exampleCanonical": "http://hl7.org/fhir/us/uscdi-scd/StructureDefinition/uscdi-scd-condition-problems"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "Encounter"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "Encounter-maya-johnson-ed-encounter.html"
}
],
"reference": {
"reference": "Encounter/maya-johnson-ed-encounter"
},
"name": "Example Encounter — ED Visit for Vaso-Occlusive Crisis",
"description": "Example SCDEncounter for Maya Johnson's emergency department visit for\na vaso-occlusive pain crisis. Demonstrates required elements including\nclass, type, participant, period, and reason reference.",
"exampleCanonical": "http://hl7.org/fhir/us/uscdi-scd/StructureDefinition/uscdi-scd-encounter"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "Observation"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "Observation-maya-johnson-hgb-fractionation.html"
}
],
"reference": {
"reference": "Observation/maya-johnson-hgb-fractionation"
},
"name": "Example Lab Result — Hemoglobin Fractionation (Pre-Transfusion)",
"description": "Example SCDObservationLaboratoryResult representing a pre-exchange transfusion\nhemoglobin fractionation panel for Maya Johnson. Shows HbS% = 58% (above the\n<30% target), triggering the exchange transfusion procedure.",
"exampleCanonical": "http://hl7.org/fhir/us/uscdi-scd/StructureDefinition/uscdi-scd-laboratory-result"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "Medication"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "Medication-hydroxyurea-medication-example.html"
}
],
"reference": {
"reference": "Medication/hydroxyurea-medication-example"
},
"name": "Example Medication — Hydroxyurea (Siklos)",
"description": "Example SCDMedication for hydroxyurea, a first-line disease-modifying therapy for HbSS SCD.",
"exampleCanonical": "http://hl7.org/fhir/us/uscdi-scd/StructureDefinition/uscdi-scd-medication"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "Organization"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "Organization-metro-scd-center-org.html"
}
],
"reference": {
"reference": "Organization/metro-scd-center-org"
},
"name": "Example Organization — Metro Sickle Cell Center",
"description": "Example SCDOrganization for a fictional comprehensive SCD treatment center.",
"exampleCanonical": "http://hl7.org/fhir/us/uscdi-scd/StructureDefinition/uscdi-scd-organization"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "Patient"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "Patient-maya-johnson-patient.html"
}
],
"reference": {
"reference": "Patient/maya-johnson-patient"
},
"name": "Example Patient — Maya Johnson (SCD HbSS)",
"description": "Example SCDPatient instance for Maya Johnson, a fictional 28-year-old woman\nwith HbSS sickle cell disease. Demonstrates required and Must Support elements\nincluding US Core race and ethnicity extensions.",
"exampleCanonical": "http://hl7.org/fhir/us/uscdi-scd/StructureDefinition/uscdi-scd-patient"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "Practitioner"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "Practitioner-dr-sarah-chen-practitioner.html"
}
],
"reference": {
"reference": "Practitioner/dr-sarah-chen-practitioner"
},
"name": "Example Practitioner — Dr. Sarah Chen, Hematologist",
"description": "Example SCDPractitioner instance for Dr. Sarah Chen, a fictional hematologist.",
"exampleCanonical": "http://hl7.org/fhir/us/uscdi-scd/StructureDefinition/uscdi-scd-practitioner"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "ServiceRequest"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "ServiceRequest-exchange-transfusion-order-example.html"
}
],
"reference": {
"reference": "ServiceRequest/exchange-transfusion-order-example"
},
"name": "Example ServiceRequest — Exchange Transfusion Order",
"description": "Example SCDServiceRequest for an automated red cell exchange transfusion order.",
"exampleCanonical": "http://hl7.org/fhir/us/uscdi-scd/StructureDefinition/uscdi-scd-servicerequest"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "Observation"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "Observation-maya-johnson-spo2.html"
}
],
"reference": {
"reference": "Observation/maya-johnson-spo2"
},
"name": "Example Vital Sign — Oxygen Saturation (SpO2) on ED Arrival",
"description": "Example SCDObservationVitalSigns for oxygen saturation (SpO2) measured by\npulse oximetry on ED arrival. SpO2 of 91% — below baseline, raising concern\nfor early acute chest syndrome.",
"exampleCanonical": "http://hl7.org/fhir/us/uscdi-scd/StructureDefinition/uscdi-scd-vital-signs"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "Observation"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "Observation-maya-johnson-pain-score.html"
}
],
"reference": {
"reference": "Observation/maya-johnson-pain-score"
},
"name": "Example Vital Sign — Pain Severity Score (NRS) on ED Arrival",
"description": "Example SCDObservationVitalSigns for pain severity on a 0-10 Numeric Rating\nScale (NRS), reported by Maya Johnson on ED arrival during vaso-occlusive crisis.",
"exampleCanonical": "http://hl7.org/fhir/us/uscdi-scd/StructureDefinition/uscdi-scd-vital-signs"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "ValueSet"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "ValueSet-scd-acute-complication-vs.html"
}
],
"reference": {
"reference": "ValueSet/scd-acute-complication-vs"
},
"name": "SCD Acute Complication Value Set",
"description": "Value set of codes representing acute complications of Sickle Cell Disease\nthat may be documented as encounter diagnoses. Includes vaso-occlusive crisis,\nacute chest syndrome, splenic sequestration, stroke, and other acute events.\n\nTODO: Expand SNOMED CT concept coverage. Submit to VSAC.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:extension"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-scd-blood-product-age.html"
}
],
"reference": {
"reference": "StructureDefinition/scd-blood-product-age"
},
"name": "SCD Blood Product Age at Transfusion",
"description": "Documents the age of a blood product in days from the date of collection\n(phlebotomy) to the date of transfusion. For Sickle Cell Disease patients\nundergoing automated red cell exchange (erythrocytapheresis), fresher blood\nproducts (≤7 days) are preferred to maximize post-exchange efficacy and\nminimize issues related to 2,3-DPG depletion and increased RBC rigidity\nin stored cells.\n\nThis extension is intended for use on SCDBiologicallyDerivedProduct instances\nwhen the product age at time of transfusion is clinically documented.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "CodeSystem"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "CodeSystem-scd-blood-product-processing-cs.html"
}
],
"reference": {
"reference": "CodeSystem/scd-blood-product-processing-cs"
},
"name": "SCD Blood Product Processing Code System",
"description": "Local code system for blood product processing steps and attributes\nrelevant to transfusion therapy in Sickle Cell Disease. Covers extended\nantigen matching criteria, processing modifiers, and product selection\nrequirements specific to SCD care.\n\nTODO: Map to ISBT 128 processing codes and SNOMED CT where equivalents\nexist. Consider ISBT 128 as the primary coding system and use this only\nfor concepts not yet covered.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "ValueSet"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "ValueSet-scd-blood-product-type-vs.html"
}
],
"reference": {
"reference": "ValueSet/scd-blood-product-type-vs"
},
"name": "SCD Blood Product Type Value Set",
"description": "Value set of codes representing blood product types used in the care of\npatients with Sickle Cell Disease, including red blood cell products and\nhematopoietic progenitor cell products for transplantation.\n\nCodes sourced from SNOMED CT. ISBT 128 codes SHOULD also be included\nwhere available; TODO: add ISBT 128 code system and concepts.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "ValueSet"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "ValueSet-scd-diagnosis-vs.html"
}
],
"reference": {
"reference": "ValueSet/scd-diagnosis-vs"
},
"name": "SCD Diagnosis Value Set",
"description": "Value set of codes representing the primary Sickle Cell Disease diagnoses,\nincluding all major genotypic subtypes. Intended for use with the\nSCDConditionProblemsAndHealthConcerns profile for the primary SCD diagnosis\nentry on a patient's problem list.\n\nIncludes ICD-10-CM D57.x codes and equivalent SNOMED CT codes.\n\nTODO: Expand with complete SNOMED CT concept set and confirm ICD-10-CM\ncode coverage. Submit to VSAC for OID assignment.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:extension"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-scd-genotype.html"
}
],
"reference": {
"reference": "StructureDefinition/scd-genotype"
},
"name": "SCD Genotype",
"description": "Captures the confirmed Sickle Cell Disease genotype or subtype of the\npatient in a structured, coded format. This extension is intended for use\non the Condition resource representing the patient's primary SCD diagnosis.\n\nThe genotype SHALL be coded using a value from the SCDGenotypeVS value set,\nwhich includes SNOMED CT and ICD-10-CM codes for all major SCD subtypes\n(HbSS, HbSC, HbS-Beta0-thalassemia, HbS-Beta+-thalassemia, etc.).\n\nThis extension supports:\n- Clinical decision support (e.g., hydroxyurea dosing guidance by genotype)\n- Population health stratification by SCD subtype\n- Research and quality measure calculations\n- Transfusion planning (HbSS vs HbSC affects target HbS%)\n\nNote: Confirmation of genotype requires hemoglobin fractionation (HPLC or\nelectrophoresis) and/or molecular genetic testing. The verificationStatus\nof the parent Condition SHALL reflect the confirmation status.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "ValueSet"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "ValueSet-scd-genotype-vs.html"
}
],
"reference": {
"reference": "ValueSet/scd-genotype-vs"
},
"name": "SCD Genotype Value Set",
"description": "Value set of codes representing confirmed Sickle Cell Disease genotypes\nfor use with the SCDGenotypeExtension on the patient's primary SCD\nCondition resource.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:extension"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-scd-hydroxyurea-adherence.html"
}
],
"reference": {
"reference": "StructureDefinition/scd-hydroxyurea-adherence"
},
"name": "SCD Hydroxyurea Adherence",
"description": "Captures the documented adherence level of a patient to hydroxyurea therapy.\nHydroxyurea is the cornerstone disease-modifying therapy for SCD, but its\neffectiveness depends critically on consistent adherence. Non-adherence is\nassociated with higher rates of VOC, ACS, and mortality.\n\nAdherence may be assessed by:\n- Patient/caregiver self-report\n- Pharmacy refill records (Medication Possession Ratio / PDC)\n- Laboratory biomarker (MCV elevation, HbF% increase as markers of response)\n- Pill count\n\nThis extension is intended for use on MedicationStatement or as a component\nof an Observation (adherence monitoring encounter finding).\n\nTODO: Align adherence coding with established adherence measurement frameworks\n(e.g., MMAS, ARMS, WHO adherence classification) and reference appropriate\nLOINC codes if available.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:extension"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-scd-iron-chelation-indication.html"
}
],
"reference": {
"reference": "StructureDefinition/scd-iron-chelation-indication"
},
"name": "SCD Iron Chelation Indication",
"description": "Documents the clinical indication and triggering laboratory or imaging\nthreshold that led to initiation of iron chelation therapy for a patient\nwith Sickle Cell Disease on chronic transfusion therapy.\n\nIron chelation is indicated when serum ferritin exceeds a threshold\n(commonly >1000 ng/mL sustained over time, or per institutional protocol)\nor when liver iron concentration (LIC) measured by MRI exceeds guidelines\n(typically >5–7 mg Fe/g dry weight). This extension captures the specific\ntrigger value and the method used to assess iron burden.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "ValueSet"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "ValueSet-scd-laboratory-panel-vs.html"
}
],
"reference": {
"reference": "ValueSet/scd-laboratory-panel-vs"
},
"name": "SCD Laboratory Panel Value Set",
"description": "Value set of LOINC codes for laboratory tests routinely ordered and reported\nin the monitoring and management of Sickle Cell Disease. Covers CBC,\nhemoglobin fractionation, hemolysis markers, iron studies, renal function,\nhepatic function, and immunohematology tests.\n\nTODO: Expand with complete LOINC coverage. Submit to VSAC.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "ValueSet"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "ValueSet-scd-medication-vs.html"
}
],
"reference": {
"reference": "ValueSet/scd-medication-vs"
},
"name": "SCD Medication Value Set",
"description": "Value set of RxNorm codes for medications used in Sickle Cell Disease\nmanagement, including disease-modifying therapies, iron chelation agents,\nand prophylactic antibiotics.\n\nTODO: Confirm RxNorm concept IDs (placeholders marked with comments).\nSubmit to VSAC for OID assignment and curated maintenance.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:extension"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-scd-newborn-screen-reference.html"
}
],
"reference": {
"reference": "StructureDefinition/scd-newborn-screen-reference"
},
"name": "SCD Newborn Screen Reference",
"description": "References the Observation or DiagnosticReport representing the newborn\nscreening result that originally identified or confirmed the patient's\nSickle Cell Disease diagnosis. This extension supports longitudinal care\ncoordination between state newborn screening programs, follow-up programs\n(such as HRSA-funded SCD newborn screening follow-up programs), and ongoing\nclinical care.\n\nThe referenced resource SHOULD be an Observation (hemoglobin fractionation\nresult from newborn heel stick) or a DiagnosticReport representing the\ncomplete newborn screen report.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "CodeSystem"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "CodeSystem-scd-observation-category-cs.html"
}
],
"reference": {
"reference": "CodeSystem/scd-observation-category-cs"
},
"name": "SCD Observation Category Code System",
"description": "Local code system defining observation category codes specific to Sickle\nCell Disease clinical data exchange. These categories supplement the\nstandard HL7 observation-category codes (laboratory, vital-signs, etc.)\nwith SCD-specific sub-categories.\n\nTODO: Review against LOINC Part codes and US Core observation categories\nbefore finalizing. Consider submitting concepts to HL7 THO or LOINC.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "ValueSet"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "ValueSet-scd-procedure-vs.html"
}
],
"reference": {
"reference": "ValueSet/scd-procedure-vs"
},
"name": "SCD Procedure Value Set",
"description": "Value set of codes representing procedures commonly performed in the\nmanagement of Sickle Cell Disease, including transfusion, exchange\ntransfusion, stem cell transplantation, and diagnostic monitoring procedures.\n\nTODO: Add complete CPT code coverage. Submit to VSAC.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "ValueSet"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "ValueSet-scd-red-cell-antigen-vs.html"
}
],
"reference": {
"reference": "ValueSet/scd-red-cell-antigen-vs"
},
"name": "SCD Red Cell Antigen Value Set",
"description": "Value set of codes representing red cell blood group antigens used in\nextended antigen-matched transfusion for Sickle Cell Disease patients.\nCovers antigens in the Rh, Kell, Duffy, Kidd, and MNS blood group systems.\n\nTODO: Map to ISBT 128 antigen codes (primary coding system for blood banking).\nSNOMED CT codes used as placeholder pending ISBT 128 integration.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:extension"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-scd-transfusion-antigen-match.html"
}
],
"reference": {
"reference": "StructureDefinition/scd-transfusion-antigen-match"
},
"name": "SCD Transfusion Red Cell Antigen Match Profile",
"description": "Documents the red cell antigen matching criteria that were applied in\nselecting a blood product for transfusion in a patient with Sickle Cell Disease.\n\nExtended antigen-matched transfusion — typically including C, c, E, e (Rh),\nK (Kell), Fya/Fyb (Duffy), and Jka/Jkb (Kidd) at minimum — significantly\nreduces the risk of alloimmunization in SCD patients on chronic transfusion\ntherapy. This extension enables structured documentation of which antigens\nwere matched for a given transfusion event.\n\nThis extension SHALL be used on SCDBiologicallyDerivedProduct instances when\nextended antigen matching was performed. It MAY also be used on the SCDProcedure\ninstance representing the transfusion to document the matching requirements\nspecified in the order.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:extension"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-scd-voc-frequency.html"
}
],
"reference": {
"reference": "StructureDefinition/scd-voc-frequency"
},
"name": "SCD Vaso-Occlusive Crisis Frequency",
"description": "Documents the reported or documented frequency of vaso-occlusive crisis (VOC)\nepisodes for a patient with Sickle Cell Disease over a defined observation\nperiod. This is a key clinical parameter used to assess disease severity\nand guide therapy escalation.\n\nClinical context:\n- ≥2 VOC episodes/year: threshold for considering hydroxyurea initiation\n- ≥2 VOC episodes/year on hydroxyurea: threshold for considering crizanlizumab\n- Frequent hospitalizations for VOC: consideration for HSCT evaluation\n\nThis extension is intended for use on the Condition resource representing\nthe patient's primary SCD diagnosis (problem list entry).",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "ValueSet"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "ValueSet-scd-vital-signs-vs.html"
}
],
"reference": {
"reference": "ValueSet/scd-vital-signs-vs"
},
"name": "SCD Vital Signs Value Set",
"description": "Value set of LOINC codes for vital signs especially relevant to monitoring\npatients with Sickle Cell Disease. Extends the US Core Vital Signs value set\nwith the addition of pain severity score (NRS), which is critical for\nvaso-occlusive crisis assessment.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:resource"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-uscdi-scd-allergyintolerance.html"
}
],
"reference": {
"reference": "StructureDefinition/uscdi-scd-allergyintolerance"
},
"name": "USCDI-SCD AllergyIntolerance",
"description": "The USCDI-SCD AllergyIntolerance profile represents drug allergies, food\nallergies, and adverse reactions — including transfusion reactions — for\npatients with Sickle Cell Disease. This profile extends the\n[US Core AllergyIntolerance Profile](http://hl7.org/fhir/us/core/STU8.0.1/StructureDefinition-us-core-allergyintolerance.html).\n\nSCD patients are at elevated risk for:\n- **Drug allergies/reactions:** NSAIDs (commonly prescribed for pain but may\n cause renal toxicity in SCD), opioids, penicillin (prophylaxis for\n asplenic patients), hydroxyurea, iron chelation agents\n- **Transfusion reactions:** Including hemolytic transfusion reactions (a\n life-threatening complication), febrile non-hemolytic transfusion reactions,\n allergic reactions, and transfusion-related acute lung injury (TRALI)\n\nClinically significant red cell alloantibodies (e.g., anti-E, anti-C,\nanti-Kell, anti-Jka) that arise from chronic transfusion SHOULD be documented.\nSystems SHOULD provide a mechanism to link AllergyIntolerance entries for\ntransfusion reactions to the causative BiologicallyDerivedProduct encounter.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:resource"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-uscdi-scd-biologicallyderivedproduct.html"
}
],
"reference": {
"reference": "StructureDefinition/uscdi-scd-biologicallyderivedproduct"
},
"name": "USCDI-SCD BiologicallyDerivedProduct",
"description": "The USCDI-SCD BiologicallyDerivedProduct profile represents a blood product\nor other biologically derived product used in the care of patients with\nSickle Cell Disease. This profile is based directly on the\n[FHIR R4 BiologicallyDerivedProduct resource](http://hl7.org/fhir/R4/biologicallyderivedproduct.html)\nas there is no US Core parent profile for this resource.\n\n**Role in SCD Care:**\n\nTransfusion therapy is a cornerstone of SCD management. Blood products are\nused for:\n- **Acute transfusion:** Rapid correction of severe anemia (aplastic crisis,\n splenic sequestration), preparation for surgery, or stroke treatment\n- **Chronic transfusion therapy:** Regular simple or exchange transfusions\n for primary and secondary stroke prevention, and refractory VOC management\n- **Automated red cell exchange (erythrocytapheresis):** Replaces patient\n red cells with donor cells; achieves HbS% <30% more effectively than\n simple transfusion with less iron loading\n- **Hematopoietic stem cell transplantation (HSCT):** Allogeneic hematopoietic\n progenitor cell products (HPC-A or HPC-M) used in curative HSCT\n\n**Extended Antigen Matching:**\n\nSCD patients on chronic transfusion are at high risk for red cell\nalloimmunization due to antigen differences between Black donors and\npredominantly African American SCD patients. Extended phenotype-matched\ntransfusion — matching for C, E, K (Kell), Fya (Duffy a), and Jkb (Kidd b)\nantigens at minimum — significantly reduces alloimmunization rates.\nThis profile supports documentation of antigen matching requirements and\nproduct antigen phenotype via extension or processing element.\n\n**ISBT 128 Coding:**\n\nBlood products SHOULD be coded using ISBT 128, the international standard\nfor blood product labeling. SNOMED CT codes MAY also be included.\n\n**Limitations in FHIR R4:**\n\nThe FHIR R4 BiologicallyDerivedProduct resource has limited granularity\ncompared to FHIR R5. Key information about antigen matching, irradiation\nstatus, and leukoreduction may require extension elements in R4.\nThis profile defines extensions for SCD-specific blood product attributes.\nSee [Extensions](extensions.html) for the list of extensions applied here.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:resource"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-uscdi-scd-careplan.html"
}
],
"reference": {
"reference": "StructureDefinition/uscdi-scd-careplan"
},
"name": "USCDI-SCD CarePlan",
"description": "The USCDI-SCD CarePlan profile represents a structured care plan for a patient\nwith Sickle Cell Disease. This profile extends the\n[US Core CarePlan Profile](http://hl7.org/fhir/us/core/STU8.0.1/StructureDefinition-us-core-careplan.html).\n\nSCD care plans support coordinated, longitudinal management across hematology,\nprimary care, emergency care, and specialty services. Common care plan types\nin SCD include:\n\n- **Chronic Transfusion Therapy Plan:** Defines transfusion schedule,\n target pre-transfusion HbS percentage (typically <30% for stroke\n prevention), extended antigen matching requirements, and iron chelation\n monitoring triggers.\n- **Hydroxyurea Management Plan:** Documents starting dose, escalation\n schedule, target HbF or ANC, monitoring intervals, and adherence goals.\n- **Pain Management Plan:** Specifies individualized home pain management\n regimen, crisis protocol, opioid prescribing agreements, and ED care\n instructions.\n- **Transition-of-Care Plan:** Documents the plan for transferring a\n pediatric SCD patient to adult care, including care team changes and\n patient education goals.\n- **Emergency Department Care Plan:** Provides ED providers with\n patient-specific SCD management instructions (analgesic regimen,\n transfusion thresholds, care escalation criteria).\n\nThe `CarePlan.text` narrative SHALL contain a human-readable summary of the\ncare plan. Structured `activity` entries SHOULD reference ServiceRequest,\nMedicationRequest, and other resources where available.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "CapabilityStatement"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "CapabilityStatement-uscdi-scd-client.html"
}
],
"reference": {
"reference": "CapabilityStatement/uscdi-scd-client"
},
"name": "USCDI-SCD Client CapabilityStatement",
"description": "Defines the minimum FHIR API capabilities required for a system acting as\na FHIR client (data requestor) conformant with the USCDI-SCD Implementation\nGuide. Clients SHALL be capable of processing all Must Support elements\nin USCDI-SCD profiles.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:resource"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-uscdi-scd-condition-encounter-diagnosis.html"
}
],
"reference": {
"reference": "StructureDefinition/uscdi-scd-condition-encounter-diagnosis"
},
"name": "USCDI-SCD Condition Encounter Diagnosis",
"description": "The USCDI-SCD Condition Encounter Diagnosis profile represents an acute\ndiagnosis documented during an encounter for a patient with Sickle Cell Disease.\nThis profile extends the\n[US Core Condition Encounter Diagnosis Profile](http://hl7.org/fhir/us/core/STU8.0.1/StructureDefinition-us-core-condition-encounter-diagnosis.html).\n\nCommon acute SCD encounter diagnoses represented by this profile include:\n- Vaso-occlusive crisis (VOC) / Acute Pain Episode\n (ICD-10-CM: D57.00, D57.01, D57.211–D57.219, D57.411–D57.419, D57.811–D57.819)\n- Acute Chest Syndrome (ACS)\n (ICD-10-CM: D57.01, D57.211, D57.411, D57.811)\n- Splenic sequestration\n (ICD-10-CM: D57.02, D57.212, D57.412, D57.812)\n- Stroke / Cerebrovascular accident in SCD\n- Priapism in SCD\n- Fever / Sepsis in SCD patient\n- Acute kidney injury in SCD\n- Acute hepatic sequestration\n\nClinical systems SHALL populate `condition.code` using SNOMED CT or ICD-10-CM\ncodes. Both code systems SHOULD be provided via `condition.code.coding`.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:resource"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-uscdi-scd-condition-problems.html"
}
],
"reference": {
"reference": "StructureDefinition/uscdi-scd-condition-problems"
},
"name": "USCDI-SCD Condition Problems and Health Concerns",
"description": "The USCDI-SCD Condition Problems and Health Concerns profile represents\nactive and resolved conditions on the problem list for a patient with Sickle\nCell Disease. This profile extends the\n[US Core Condition Problems and Health Concerns Profile](http://hl7.org/fhir/us/core/STU8.0.1/StructureDefinition-us-core-condition-problems-health-concerns.html).\n\nKey problem list entries for SCD patients represented by this profile:\n\n**SCD Diagnosis and Genotype:**\n- Sickle cell anemia (HbSS): SNOMED 127040003; ICD-10-CM D57.1\n- Sickle cell–hemoglobin C disease (HbSC): SNOMED 416180004; ICD-10-CM D57.2\n- Sickle cell–beta-0-thalassemia: SNOMED 417571000; ICD-10-CM D57.40\n- Sickle cell–beta-plus-thalassemia: SNOMED 417425009; ICD-10-CM D57.44\n- (Additional genotypes: see SCD Genotype value set)\n\n**Chronic Complications:**\n- Avascular necrosis of femoral head in SCD\n- Chronic kidney disease (CKD) in SCD\n- Proliferative retinopathy in SCD\n- Pulmonary arterial hypertension in SCD\n- Silent cerebral infarction in SCD\n- Chronic iron overload (due to transfusion)\n- Leg ulcers in SCD\n- Priapism (recurrent)\n\n**Psychosocial Health Concerns:**\n- Chronic pain syndrome\n- Depression complicating SCD\n- Anxiety disorder in SCD patient\n\nThe primary SCD diagnosis (genotype) SHALL be included on the problem list\nfor all patients within scope of this IG.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:resource"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-uscdi-scd-encounter.html"
}
],
"reference": {
"reference": "StructureDefinition/uscdi-scd-encounter"
},
"name": "USCDI-SCD Encounter",
"description": "The USCDI-SCD Encounter profile represents a clinical encounter for a patient\nwith Sickle Cell Disease. This profile extends the\n[US Core Encounter Profile](http://hl7.org/fhir/us/core/STU8.0.1/StructureDefinition-us-core-encounter.html).\n\nSCD patients frequently present across multiple care settings. Common SCD\nencounter types include:\n- **Emergency visits** for vaso-occlusive crisis (VOC), acute chest syndrome\n (ACS), fever/infection, splenic sequestration, and priapism\n- **Outpatient hematology visits** for disease monitoring and medication\n management\n- **Day hospital / infusion center visits** for chronic transfusion therapy\n (simple and exchange transfusion)\n- **Inpatient admissions** for severe VOC, ACS, stroke, or hematopoietic\n stem cell transplantation (HSCT)\n\nThe reason for encounter (reasonCode or reasonReference) SHOULD reference an\nUSCDI-SCD Condition where applicable. The encounter SHOULD be linked to\nBiologicallyDerivedProduct resources when a blood product transfusion occurs.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:resource"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-uscdi-scd-laboratory-result.html"
}
],
"reference": {
"reference": "StructureDefinition/uscdi-scd-laboratory-result"
},
"name": "USCDI-SCD Laboratory Result",
"description": "The USCDI-SCD Laboratory Result profile represents laboratory test results\nrelevant to Sickle Cell Disease monitoring and management. This profile\nextends the [US Core Laboratory Result Observation Profile](http://hl7.org/fhir/us/core/STU8.0.1/StructureDefinition-us-core-observation-lab.html).\n\nSCD requires extensive laboratory monitoring across multiple domains:\n\n**Complete Blood Count (CBC):** Hemoglobin (baseline ~7-8 g/dL in HbSS),\nreticulocyte count, MCV, WBC, ANC, platelet count — monitored regularly\nand during acute events.\n\n**Hemoglobin Fractionation:** HPLC or electrophoresis measuring HbS%,\nHbF%, HbA%, HbA2%, HbC% — essential for diagnosis confirmation, monitoring\nhydroxyurea response (HbF target), and pre/post-transfusion assessment.\nThe target pre-exchange transfusion HbS% is typically <30% for stroke\nprevention and <50% for general VOC management.\n\n**Hemolysis Markers:** LDH, total/direct bilirubin, haptoglobin, reticulocyte\ncount — elevated in SCD due to chronic hemolysis; useful for monitoring\ndisease activity and response to therapy.\n\n**Iron Studies and Ferritin:** Critical for patients on chronic transfusion\ntherapy to detect and monitor transfusional hemosiderosis. Ferritin >1000 ng/mL\ntypically triggers iron chelation therapy.\n\n**Renal Function:** Serum creatinine, eGFR, and UACR — SCD nephropathy\nis a common chronic complication; annual screening is recommended.\n\n**Immunohematology:** Extended red cell antigen phenotyping (Rh, Kell, Duffy,\nKidd, MNS) before initiating chronic transfusion to enable antigen-matched\ntransfusions and reduce alloimmunization risk. Red cell antibody screening\nfor alloantibodies that develop over time.\n\nLaboratory results SHALL use LOINC codes for `observation.code`. Results\nSHOULD include reference ranges where applicable.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:resource"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-uscdi-scd-location.html"
}
],
"reference": {
"reference": "StructureDefinition/uscdi-scd-location"
},
"name": "USCDI-SCD Location",
"description": "The USCDI-SCD Location profile represents a physical location where SCD\ncare is delivered. This profile extends the [US Core Location Profile](http://hl7.org/fhir/us/core/STU8.0.1/StructureDefinition-us-core-location.html)\nwithout additional constraints.\n\nSCD patients receive care across a broad range of locations, including\nemergency departments (often for vaso-occlusive crisis), outpatient\nhematology clinics, day hospitals and infusion centers (for chronic\ntransfusion therapy), and inpatient units (for acute chest syndrome,\nstroke, and hematopoietic stem cell transplantation).",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:resource"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-uscdi-scd-medication.html"
}
],
"reference": {
"reference": "StructureDefinition/uscdi-scd-medication"
},
"name": "USCDI-SCD Medication",
"description": "The USCDI-SCD Medication profile represents medications prescribed or\nadministered to patients with Sickle Cell Disease. This profile extends the\n[US Core Medication Profile](http://hl7.org/fhir/us/core/STU8.0.1/StructureDefinition-us-core-medication.html).\n\nSCD pharmacotherapy includes a spectrum of agents:\n\n**Disease-Modifying Therapies:**\n- Hydroxyurea (Droxia®, Siklos®) — increases fetal hemoglobin (HbF),\n reduces sickling frequency and VOC rate; first-line therapy for HbSS/HbS-Beta0\n- L-glutamine (Endari®) — reduces oxidative stress; FDA-approved for SCD ≥5y\n- Crizanlizumab (Adakveo®) — anti-P-selectin antibody; reduces VOC frequency\n- Voxelotor (Oxbryta®) — increases Hgb oxygen affinity (NOTE: withdrawn from\n US market September 2024; include for historical medication records)\n- Exagamglogene autotemcel (Casgevy®) — gene editing therapy (CTX001)\n- Lovotibeglogene autotemcel (Lyfgenia®) — gene addition therapy (bb1111)\n\n**Iron Chelation Therapy:**\n- Deferasirox (Exjade®, Jadenu®) — oral; for transfusional iron overload\n- Deferoxamine (Desferal®) — parenteral (subcutaneous/IV infusion)\n- Deferiprone (Ferriprox®) — oral; used in combination or intolerance\n\n**Prophylaxis:**\n- Penicillin V or amoxicillin — for asplenia-related infection prophylaxis\n (standard of care for children with SCD)\n\nAll medications SHALL use RxNorm codes where available. NDC codes MAY be\nincluded as an additional coding for dispensed medications.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:resource"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-uscdi-scd-organization.html"
}
],
"reference": {
"reference": "StructureDefinition/uscdi-scd-organization"
},
"name": "USCDI-SCD Organization",
"description": "The USCDI-SCD Organization profile represents a healthcare organization\ninvolved in providing care to patients with Sickle Cell Disease. This\nprofile extends the [US Core Organization Profile](http://hl7.org/fhir/us/core/STU8.0.1/StructureDefinition-us-core-organization.html)\nwithout additional constraints.\n\nRelevant organization types in SCD care include:\n- Comprehensive Sickle Cell Disease Treatment Centers (HRSA-funded)\n- Hematology and Oncology practices\n- Federally Qualified Health Centers (FQHCs)\n- Academic Medical Centers with SCD programs\n- Hospital Blood Banks and Transfusion Services\n- Community health organizations and patient advocacy groups",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:resource"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-uscdi-scd-patient.html"
}
],
"reference": {
"reference": "StructureDefinition/uscdi-scd-patient"
},
"name": "USCDI-SCD Patient",
"description": "The USCDI-SCD Patient profile represents a patient with Sickle Cell Disease (SCD)\nor at risk for SCD. This profile extends the [US Core Patient Profile](http://hl7.org/fhir/us/core/STU8.0.1/StructureDefinition-us-core-patient.html)\nand imposes no additional constraints beyond those defined in US Core, but\nestablishes this as the canonical patient profile for the USCDI-SCD IG,\nenabling consistent referencing across all other profiles in this guide.\n\nRace and ethnicity extensions (inherited from US Core) are surfaced here as\nMust Support elements given their importance in SCD health equity reporting.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:resource"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-uscdi-scd-practitioner.html"
}
],
"reference": {
"reference": "StructureDefinition/uscdi-scd-practitioner"
},
"name": "USCDI-SCD Practitioner",
"description": "The USCDI-SCD Practitioner profile represents a healthcare provider involved\nin the care of patients with Sickle Cell Disease. This profile extends the\n[US Core Practitioner Profile](http://hl7.org/fhir/us/core/STU8.0.1/StructureDefinition-us-core-practitioner.html)\nwithout additional constraints, establishing it as the canonical practitioner\nreference for the USCDI-SCD IG.\n\nCommon practitioner types in SCD care include hematologists, emergency medicine\nphysicians, primary care providers, pain management specialists, social workers,\nand patient care coordinators.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:resource"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-uscdi-scd-practitionerrole.html"
}
],
"reference": {
"reference": "StructureDefinition/uscdi-scd-practitionerrole"
},
"name": "USCDI-SCD PractitionerRole",
"description": "The USCDI-SCD PractitionerRole profile represents the role, organization,\nand location associations of a provider involved in SCD care. This profile\nextends the [US Core PractitionerRole Profile](http://hl7.org/fhir/us/core/STU8.0.1/StructureDefinition-us-core-practitionerrole.html).\n\nSCD care teams frequently include providers across multiple specialties and\norganizations. This profile enables systems to represent care team composition,\nincluding hematology specialists, primary care, emergency, and care management\nroles, supporting care coordination across settings.\n\nRelevant NUCC specialty codes include:\n- 207RH0000X — Hematology (Internal Medicine)\n- 207RH0003X — Hematology & Oncology\n- 208D00000X — General Practice\n- 261QF0400X — Federally Qualified Health Center",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:resource"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-uscdi-scd-procedure.html"
}
],
"reference": {
"reference": "StructureDefinition/uscdi-scd-procedure"
},
"name": "USCDI-SCD Procedure",
"description": "The USCDI-SCD Procedure profile represents procedures performed on or for\npatients with Sickle Cell Disease. This profile extends the\n[US Core Procedure Profile](http://hl7.org/fhir/us/core/STU8.0.1/StructureDefinition-us-core-procedure.html).\n\nSCD-specific procedures represented by this profile include:\n\n**Transfusion Procedures:**\n- Simple red blood cell transfusion (SNOMED: 116859006 / CPT: 36430)\n- Automated red cell exchange transfusion / erythrocytapheresis\n (SNOMED: 71493000 / CPT: 36516)\n\n**Definitive/Surgical Procedures:**\n- Hematopoietic stem cell transplantation (HSCT) / bone marrow transplant\n- Splenectomy (acute sequestration or elective)\n- Central venous catheter / implantable port placement\n\n**Monitoring/Diagnostic Procedures:**\n- Transcranial Doppler (TCD) ultrasound (stroke risk screening)\n- Echocardiogram (pulmonary hypertension screening)\n- Liver MRI (iron quantification — R2*/T2* technique)\n\nWhen `procedure.code` indicates a transfusion, the procedure SHALL link to\none or more SCDBiologicallyDerivedProduct instances via\n`procedure.usedReference` to document the specific blood product(s) used.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "CapabilityStatement"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "CapabilityStatement-uscdi-scd-server.html"
}
],
"reference": {
"reference": "CapabilityStatement/uscdi-scd-server"
},
"name": "USCDI-SCD Server CapabilityStatement",
"description": "Defines the minimum FHIR API capabilities required for a system acting as\na FHIR server (data responder) conformant with the USCDI-SCD Implementation\nGuide. Servers SHALL support read and search operations for all required\nUSCDI-SCD profiles.",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:resource"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-uscdi-scd-servicerequest.html"
}
],
"reference": {
"reference": "StructureDefinition/uscdi-scd-servicerequest"
},
"name": "USCDI-SCD ServiceRequest",
"description": "The USCDI-SCD ServiceRequest profile represents a referral, order, or\ncare coordination request for a patient with Sickle Cell Disease. This\nprofile extends the\n[US Core ServiceRequest Profile](http://hl7.org/fhir/us/core/STU8.0.1/StructureDefinition-us-core-servicerequest.html).\n\nSCD-specific service requests include:\n- **Specialty referrals:** Hematology, pain management, nephrology,\n ophthalmology, neurology (stroke program), hepatology, pulmonology,\n and hematopoietic stem cell transplantation (HSCT) programs\n- **Transfusion orders:** Simple transfusion and automated red cell\n exchange (erythrocytapheresis) — these requests link to the\n SCDProcedure and SCDBiologicallyDerivedProduct profiles\n- **Laboratory orders:** Hemoglobin fractionation, CBC, ferritin,\n red cell antigen phenotyping, cross-match for transfusion\n- **Imaging orders:** Transcranial Doppler (TCD) ultrasound for stroke\n risk assessment, MRI brain, echocardiogram, liver MRI for iron quantification\n- **Preventive care orders:** Vaccination schedules, newborn screening\n follow-up, genetic counseling referrals",
"exampleBoolean": false
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/resource-information",
"valueString": "StructureDefinition:resource"
},
{
"url": "http://hl7.org/fhir/StructureDefinition/implementationguide-page",
"valueUri": "StructureDefinition-uscdi-scd-vital-signs.html"
}
],
"reference": {
"reference": "StructureDefinition/uscdi-scd-vital-signs"
},
"name": "USCDI-SCD Vital Signs",
"description": "The USCDI-SCD Vital Signs profile represents vital sign measurements\nrelevant to monitoring patients with Sickle Cell Disease. This profile\nextends the [US Core Vital Signs Profile](http://hl7.org/fhir/us/core/STU8.0.1/StructureDefinition-us-core-vital-signs.html).\n\nVital signs are particularly important in SCD for:\n\n**Oxygen Saturation (SpO2):**\nPulse oximetry is essential for detecting and monitoring Acute Chest Syndrome\n(ACS), the leading cause of death in SCD. SCD patients have a characteristically\nlower baseline SpO2 than the general population (~95-97%) due to chronic anemia\nand abnormal hemoglobin oxygen affinity. A drop of >3% from baseline or SpO2\n<92% is clinically significant. Systems SHALL support SpO2 measurement.\nLOINC: 59408-5 (Oxygen saturation by pulse oximetry).\n\n**Pain Severity Score:**\nQuantified pain intensity is the primary metric for VOC severity assessment\nand treatment titration. The Numeric Rating Scale (NRS, 0-10) is most\ncommonly used. Pain scores SHOULD be recorded at each clinical assessment\nduring an acute pain episode.\nLOINC: 38208-5 (Pain severity — 0-10 numeric rating [NRS]).\n\n**Temperature:**\nFever (≥38.5°C / ≥101.3°F) in a patient with SCD is a medical emergency\ndue to functional asplenia and risk of overwhelming post-splenectomy infection\n(OPSI). Temperature SHALL be recorded for all ED and urgent care encounters.\n\n**Blood Pressure:**\nHypertension is a common complication of SCD nephropathy. SCD patients\noften have lower baseline blood pressure; relative hypertension can be\nclinically significant even within the \"normal\" range.\n\n**Respiratory Rate and Heart Rate:**\nTachycardia and tachypnea are early indicators of ACS, sepsis, and severe\nanemia. Respiratory rate ≥20/min with chest pain or hypoxia is a trigger\nfor ACS workup.",
"exampleBoolean": false
}
],
"page": {
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
"valueUrl": "toc.html"
}
],
"nameUrl": "toc.html",
"title": "Table of Contents",
"generation": "html",
"page": [
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
"valueUrl": "index.html"
}
],
"nameUrl": "index.html",
"title": "Home",
"generation": "markdown"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
"valueUrl": "introduction.html"
}
],
"nameUrl": "introduction.html",
"title": "Introduction",
"generation": "markdown"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
"valueUrl": "background.html"
}
],
"nameUrl": "background.html",
"title": "Background",
"generation": "markdown"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
"valueUrl": "scope_and_usage.html"
}
],
"nameUrl": "scope_and_usage.html",
"title": "Scope and Usage",
"generation": "markdown"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
"valueUrl": "overview.html"
}
],
"nameUrl": "overview.html",
"title": "Overview",
"generation": "markdown"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
"valueUrl": "audience.html"
}
],
"nameUrl": "audience.html",
"title": "Audience",
"generation": "markdown"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
"valueUrl": "conformance.html"
}
],
"nameUrl": "conformance.html",
"title": "Conformance Requirements",
"generation": "markdown"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
"valueUrl": "profiles.html"
}
],
"nameUrl": "profiles.html",
"title": "Profiles",
"generation": "markdown"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
"valueUrl": "extensions.html"
}
],
"nameUrl": "extensions.html",
"title": "Extensions",
"generation": "markdown"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
"valueUrl": "terminology.html"
}
],
"nameUrl": "terminology.html",
"title": "Terminology",
"generation": "markdown"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
"valueUrl": "security.html"
}
],
"nameUrl": "security.html",
"title": "Security and Privacy",
"generation": "markdown"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
"valueUrl": "downloads.html"
}
],
"nameUrl": "downloads.html",
"title": "Downloads",
"generation": "markdown"
},
{
"extension": [
{
"url": "http://hl7.org/fhir/tools/StructureDefinition/ig-page-name",
"valueUrl": "changes.html"
}
],
"nameUrl": "changes.html",
"title": "Change Log",
"generation": "markdown"
}
]
},
"parameter": [
{
"code": "path-resource",
"value": "input/resources"
},
{
"code": "path-resource",
"value": "fsh-generated/resources"
},
{
"code": "path-pages",
"value": "input/pagecontent"
},
{
"code": "path-pages",
"value": "fsh-generated/includes"
},
{
"code": "path-resource",
"value": "input/capabilities"
},
{
"code": "path-resource",
"value": "input/examples"
},
{
"code": "path-resource",
"value": "input/extensions"
},
{
"code": "path-resource",
"value": "input/models"
},
{
"code": "path-resource",
"value": "input/operations"
},
{
"code": "path-resource",
"value": "input/profiles"
},
{
"code": "path-resource",
"value": "input/vocabulary"
},
{
"code": "path-resource",
"value": "input/testing"
},
{
"code": "path-resource",
"value": "input/history"
},
{
"code": "path-pages",
"value": "template/config"
},
{
"code": "path-pages",
"value": "input/assets"
},
{
"code": "path-pages",
"value": "input/images"
},
{
"code": "path-tx-cache",
"value": "input-cache/txcache"
}
]
}
}