The SCDIC Executive Committee meets regularly to manage the day-to-day operations of the consortium and to update current status of study and ensure timely completion of activities in Phase I and Phase II of the Consortium. The Executive Committee membership consists of an independent Steering Committee Chairperson, the NHLBI Program Officer, the Principal Investigator and Co-PI from the Data Coordinating Center and one Investigator from a Clinical Center who serves on a 9-month rotating basis.
The SCDIC Steering Committee is the governing body of the SCDIC and has primary responsibility for the scientific direction of the Consortium, including conduct of timely data collection for the registry, needs assessment and implementation science protocols, and dissemination of research findings through presentations and publications. The Steering Committee membership consists of one Investigator from each Clinical Center, the Principal Investigator from the Data Coordinating Center, and the NHLBI Program Officer. The Steering Committee Chairperson, who is not participating as a principal investigator, is appointed by the NHLBI.
Members of the Steering Committee are:
- Chair: Alexis Thompson, MD, PhD, Northwestern University
- Center PI: Robert Gibson, PhD, Augusta University
- Center PI: Victor R. Gordeuk, MD, University of Illinois at Chicago
- Center PI: Jane Hankins, MD, MS, St. Jude Children’s Research Hospital
- Center PI: Allison King, MD, PhD, MPH, Washington University School of Medicine
- Center PI: Lynne D. Richardson, MD, FACEP, Icahn School of Medicine at Mount Sinai
- Center Co-PI: Paula Tanabe, PhD, MSN, MPH, RN, FAEN, FAAN, Duke University
- Center Co-PI: Nirmish Shah, MD, Duke University
- Center Co-PI: Marsha Treadwell, PhD, UCSF Benioff Children’s Hospital Oakland
- Center Co-PI: Julia Washko (Kanter), MD, Medical University of South Carolina
- DCC PI: Barbara L. Kroner, PhD, MPH, RTI International
- Program Officer: Sharon Smith, PhD, National Heart, Lung and Blood Institute
Needs Assessment Committee
The NAC provides expertise and guidance in the data coordination for the clinical centers’ needs assessments (NAs). The NAC reviews all of the clinical centers’ proposed NAs, and determines elements that will be amenable to a uniform system of common data elements. The NAC makes recommendations to the Steering Committee regarding final approval for each clinical center’s NA protocol. The NAC also serves as a source of expert opinion to the Steering Committee on the performance and data gathering aspects of individual NA undertaken by the clinical centers. Each clinical center representative on the NAC provides regular updates on the progress of his/her center’s ongoing NA. The NAC monitors the progress and adherence to the SCDIC Phase I timetable for the completion of the NAs and the subsequent data analysis.
The Registry Committee is responsible for determination of the common data elements (CDE) that constitutes the basis of both the initial and subsequent content of the Registry. The Committee and the DCC also provides guidance for standardization of methods of data collections and the provision of common electronic data systems. The Registry Committee identifies individuals with requisite expertise in standardized data collection among the clinical centers, and is empowered to draw upon those individuals’ expertise when necessary. The Registry Committee monitors the centers’ progress in establishing the individual center data collection protocols, enrollment of study subjects, and timely entry of subject clinical and patient-reported data.
Implementation Research Committee
The IRC is responsible for providing expert guidance to the Steering Committee in the configuration of implementation protocols that are undertaken during Phase II of the SCDIC project period. The IRC also serves as a repository for expert opinion on matters of implementation research and implementation science (IS) that have a direct bearing on the scientific activities of the SCDIC. The IRC identifies individuals with relevant expertise among all of the clinical centers, the NHLBI and the DCC, and is empowered to draw on those individuals’ knowledge when required.
The PC is responsible for prioritization, assignment, and the timely completion of all publications emanating from the scientific activities of the SCDIC. The Committee is the final arbiter of authorship disputes and facilitates the approval of all manuscripts prior to submission. The types of manuscripts include papers focusing on issues of IS relevant to SCD, methods papers describing NA and IS protocol development, as well as the results of NAs undertaken during Phase I and implementation protocols undertaken during Phase II.