Natural History Data Resource
The NHLBI initiated the Sickle Cell Disease Natural History Data Resource (SCD NHDR) to leverage existing SCD studies to build a data resource to provide phenotypic data on contemporaneous control cohorts for gene therapy trials and other studies.
The potential uses of the NHDR are broad, including:
- providing matched controls for clinical trials
- observing a cohort of untreated patients as part of a natural history study
- conducting comparative effectiveness research on a subpopulation with selected co-morbidities or drug treatment profiles.
The SCD NHDR includes data from two multi-center SCD longitudinal cohort studies with extensive annual clinical data and patient surveys: the Sickle Cell Disease Implementation Consortium (SCDIC-I and SCDIC-II) and the Globin Research Network for Data and Discovery (GRNDaD). Two of the GRNDaD centers are submitting data to the SCD NHDR.
All data obtained for the SCD NHDR are considered common data elements (CDEs) important for studies of SCD. These CDEs were identified by several working groups of SCD experts convened under the NHLBI's Cure-SC Initiative (https://cde.curesickle.org/datatools-overview). Data submission from the SCD NHDR to Biodata Catalyst, NHLBI's data repository, is done annually starting in early 2024.
