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RTI awarded 5-year grant by NHLBI to continue novel sickle cell disease research

Project aims to improve care for adults in need of treatment

RESEARCH TRIANGLE PARK, N.C. – The National Heart, Lung, and Blood Institute (NHLBI) has awarded several researchers associated with the Sickle Cell Disease Implementation Consortium (SCDIC), for which RTI serves as the coordinating center, a 5-year grant to study and address the gap between science and practice in treating sickle cell disease (SCD).

“We are excited to continue our work with the UAB, UCSF, UIC, and Augusta University as well with new partners to improve access to care for people with sickle cell disease and are grateful for the opportunity funded by NHLBI,” said Sara Jacobs Ph.D., an implementation scientist at RTI, who is serving as the co-Principal Investigator (PI). “The lessons learned from this study will not only generate evidence-based strategies for finding and engaging unaffiliated patients with SCD, but also guide future expansion of adult SCD centers and fill clinical service gaps across the country.”

The grant, "Defining the RECIPE (Recruitment and Engagement in Care to Impact Practice Enhancement) for Sickle Cell Disease,” aims to address the science-to-practice gap between evidence-based treatment guidelines and care delivery, which is especially pronounced for adult populations. Research shows that up to 50% of SCD-affected adults may not see and/or have access to SCD specialists, limiting their access to disease-specific screening, treatment, and therapies. This grant is novel in that it also advances implementation science methods in SCD research and treatment.

This new award includes collaborators from 8 different geographically diverse sites including the University of Alabama-Birmingham (UAB), University of Illinois Chicago (UIC), Augusta University, University of California-San Francisco (UCSF), University of Texas Health Science Center at Houston, University of Pennsylvania, University of Tennessee Health Science Center, and the Phoenix Children’s Hospital. The grant is housed at UAB with the NIH multi-PI leadership structure due to the size and complexity of the RECIPE project. The multiple PI team is Dr. Julie Kanter at UAB, Dr. Sara Jacobs at RTI, Dr. Marsha Treadwell at UCSF, and Dr. Lewis Hsu at UIC.

With this grant, the research consortium will use evidence-based approaches to:

  • Find and recruit individuals living with SCD who are unaffiliated into specialty care
  • Deploy Linkage to Care Specialists to engage these individuals
  • Advance retention and sustainability of specialty care by pairing patients to accessible practitioners and through telemedicine.

“RTI is proud to serve as the  coordinating center and to provide implementation science and economic cost effectiveness expertise,” said Dr. Jacobs. “We are excited to continue working with diverse collaborators from the SCDIC in advancing novel methodologies for improving and expanding evidence-based science and practice related to SCD.”

Learn more about RTI’s role in the SCDIC and Unaffiliated Patients with SCD.