Publication of data collection forms from the Sickle Cell Disease Implementation Consortium (SCDIC) registry

The Sickle Cell Disease (SCD) Implementation Consortium (SCDIC) was created to address the gap in the implementation of evidence-based interventions for SCD into clinical care and to develop a longitudinal registry of patients with SCD. The SCDIC is a cooperative research program composed of eight academic/clinical sites and one data coordinating center, and is supported by the National Institutes of Health through the National Heart, Lung, and Blood Institute (NHLBI) and the National Institute on Minority Health and Health Disparities (NIMHD). An article published in the July 15 issue of the Orphanet Journal of Rare Diseases describes the development of the SCDIC Registry, making available the registry baseline for SCD and first follow-up data collection forms and REDCap data dictionary for other SCD research efforts. Source: OJRD