Consortium Overview

National Heart, Lung and Blood Institute

The SCDIC program is funded by the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health (NIH) and is managed by the Division of Blood Diseases and Resources (DBDR).  DBDR supports research in all areas of non-neoplastic blood diseases:  Non-exclusive examples are abnormalities in hemostasis, thrombosis including changes in endothelium in response to injury as well as pathogenetic processes that perturb circulating blood cells (red blood cells, white blood cells  platelets), and bone marrow cells (stem or other hematopoetic progenitors, niche cells such as osteoclasts, osteoblasts, and fibroblasts).  In addition, DBDR supports research in transfusion, transplantation and other cell/regenerative therapies.  

The DBDR  is responsible for organizing the overall program, providing oversight of the monitoring of implementation research studies through an NHLBI Observational Study Monitoring Board (OSMB), overall monitoring of interim data and safety issues, and collaborating with the DCC and the SCDIC investigators in the development and implementation of the Registry. The Program Officer is a member of the Steering Committee and is supported by other NHLBI staff with expertise in clinical trials, implementation science and sickle cell disease.

The National Institute for Minority Health and Health Disparities will be responsible for collaborating with NHLBI on providing expert guidance to the Steering Committee on the issues pertinent to minority health and disparities.

Clinical Centers

The 8 clinical centers participating in the SCDIC represent academic and medical institutions and research teams that are multi-disciplinary in sickle cell disease, pediatrics and adult care, hematology, community-based research, and implementation science. The leadership at each clinical center is provided by the Principal Investigator (PI), who assumes responsibility for all aspects of the center's participation in the Consortium and is a member of the Steering Committee. Other members of the research team participate on the various consortium subcommittees and actively engage in the research being conducted at their centers and the dissemination of findings. A Study Coordinator oversees the implementation of the Registry, including enrollment of at least 300 patients with corresponding clinical and patient-reported data.

Data Coordinating Center

The Data Coordinating Center (DCC), RTI International, facilitates and supports the research efforts of the SCDIC by providing administrative and operational support; meeting logistics; development of the SCDIC manual of operations; support for protocol development; development and implementation of web communication tools; coordination of the selection of common data elements for the needs assessments, registry and implementation studies and development of corresponding study materials; management of data and monitoring center performance; training of center coordinators; analysis of data; and support for development of presentations and publications. The PI of the DCC is a member of the Steering Committee.