# Data Coordinating Center for Sickle Cell Disease Implementation Consortium (SCDIC)

> **NIH NIH U24** · RESEARCH TRIANGLE INSTITUTE · 2021 · $1,191,318

## Abstract

PROJECT SUMMARY/ABSTRACT
 RTI International proposes to serve as the Data Coordinating Center (DCC) for the NHLBI/NIMHD Sickle
Cell Disease Implementation Consortium (SCDIC) to facilitate and support the research efforts of the SCDIC
to improve the health and well-being of adolescents and adults with sickle cell disease (SCD) by addressing
the barriers to health care that exist at multiple levels in the United States. As the DCC for the SCDIC, RTI
will facilitate scientific collaboration to achieve the program objectives by providing logistical, data
management, and statistical support; by contributing to the design, development, and management of the
needs assessment, the SCD Registry, and individual implementation research protocols; and by establishing
study operations to efficiently monitor studies and to collect, manage, analyze, report, and disseminate the
resulting data. We will draw on RTI's 35 years of experience as a DCC for clinical research networks to
provide scientific expertise and administrative and operational support to the Consortium as it develops and
evaluates multimodal, multisector interventions to improve the rate that adolescents and adults with SCD
receive routine primary care from qualified physicians. Our leadership team will provide the SCDIC with the
scientific expertise and sound advice needed to develop an innovative research program based on rigorous
study methodology, protocol design, and data analysis.
T
he RTI team includes experts in SCD, implementation science, registry building, and consortium
management. Our team will be headed by Drs. Barbara Kroner and Lucia Rojas Smith. Dr. Kroner is an
established PI on NIH-funded DCCs, including the multicenter NHLBI GenTAC registry of more than 3,600
patients with a genetic syndrome or condition that puts them at risk for aortic aneurysms. Dr. Rojas Smith
has expertise in implementation science and served as the evaluation leader for the HRSA-funded Sickle
Cell Disease Treatment Demonstration Project National Coordinating Center. Dr. Kroner will provide
scientific leadership to the SCD registry and manage overall DCC operations; Dr. Rojas Smith will provide
scientific leadership to the needs assessment and implementation studies. They will be supported by five
experts: Drs. Donald Brambilla (biostatistician), Kathryn Hassell (hematologist), Kim Smith-Whitley (pediatric
hematologist), Bryan Weiner (implementation scientist), and Joseph Telfair (psychosocial researcher and PI
of multisite intervention programs specific to SCD). Together, this team brings the needed expertise to
support and guide all aspects of the SCDIC research program.

## Key facts

- **NIH application ID:** 10198993
- **Project number:** 5U24HL133948-06
- **Recipient organization:** RESEARCH TRIANGLE INSTITUTE
- **Principal Investigator:** Sara Rubin Jacobs
- **Activity code:** U24 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $1,191,318
- **Award type:** 5
- **Project period:** 2016-08-08 → 2023-12-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10198993

## Citation

> US National Institutes of Health, RePORTER application 10198993, Data Coordinating Center for Sickle Cell Disease Implementation Consortium (SCDIC) (5U24HL133948-06). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/10198993. Licensed CC0.

---

*[NIH grants dataset](/datasets/nih-grants) · CC0 1.0*