ConceptSet

Sickle Cell Disease, Diagnosed


Variable Name

dx_scd

Refreshed Date

2024-10

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This concept set is intended to identify patients with a diagnosis of sickle cell disease to define a study cohort.


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Funder(s)

Provenance

The original concept set was initially developed for "The Researching COVID to Enhance Recovery (RECOVER) Post-Acute Sequelae of SARS-CoV-2 (PASC) Electronic Health Record (EHR) Cohort Study" and then used in a subsequent study, "Multi-Center Retrospective Study of Iron Overload in Children Receiving HSCT for Non-Malignant Blood Disorders". This version was developed for a subsequent RECOVER study: "Post-Acute Outcomes of COVID-19 in Children and Young Adults with Sickle Cell Disease: An EHR Cohort Study from the RECOVER Initiative" (pending publication). It was reused without modification for the "Identifying Novel Signatures of Pediatric chronic pain in Real-world Environments" (INSPiRE) study as part of the exclusion criteria for a cohort of patients with primary chronic pain. Exclusion criteria in this study targeted common conditions associated with chronic secondary pain in pediatric populations.

Description

This concept set was developed from a previous SNOMED-only version used in a prior RECOVER study. This concept set includes all concepts in the prior concept set, and adds ICD-10-CM codes mapped from the original set of SNOMED codes.

The concept set was used to help define a cohort of children with sickle cell disease for a RECOVER study on sickle cell disease and post-acute outcomes of COVID-19. The concept set is intended to be broad and additional work may be required to differentiate patients with sickle cell disease from patients with sickle cell trait. This concept set was developed using the RECOVER-specific database, recover_dev_s12.

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Study Variable Applications

Multi-Center Retrospective Study of Iron Overload in Children Receiving HSCT for Non-Malignant Blood Disorders
Study Dates:2023-03 - 2026-08Sponsor Site:Children's Hospital of Philadelphia
Study to examine the epidemiology and clinical consequences of iron overload in children receiving HSCTs for non-malignant blood disorders and evaluate the association of ferritin and LIC with transplant outcomes in this population. We also plan to assess the efficacy and outcomes of post-transplant iron reduction therapy.
The Researching COVID to Enhance Recovery (RECOVER) Post-Acute Sequelae of SARS-CoV-2 (PASC) Electronic Health Record (EHR) Cohort Study
Study Dates:2021-10 - 2026-05Sponsor Site:PEDSnet Data Coordinating Center
Study to understand, prevent, and treat post-acute sequelae of SARS-CoV-2 (PASC), including Long COVID.
#### [View the RECOVER initiative website here.](https://recovercovid.org/)
Identifying Novel Signatures of Pediatric chronic pain in Real-world Environments (INSPiRE)
Study Dates:2025 - PresentSponsor Site:PEDSnet Data Coordinating Center
One in four children experience chronic pain worldwide. Primary chronic pain is the most common type of chronic pain in childhood and is associated with negative impact on physical, psychological, and social functioning. Many children have mental health symptoms (e.g., anxiety, depression, insomnia) which impact on their pain experience and are associated with poor prognosis. Identification and treatment of pediatric chronic pain is unequal across groups distinguished by gender, race, ethnicity, language of care, insurance status, and disability status. To date, little is known about how chronic pain is identified and treated across the continuum of care (primary care to tertiary care) and how treatments can be prioritized to address complex mental health comorbidities.

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Creative Commons license

a CC-BY Attribution 4.0 License.
Except where otherwised noted, this item's license is described as a CC-BY Attribution 4.0 License.


Version History

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VersionDateSummary
2*
 2026-01-13 14:02:10
Added ICD-10-CM codes mapped from the original set of SNOMED codes.
* Selected version