Key Findings
- Purpose
To describe the outcomes of a sustained, collaborative, long-term multidisciplinary health provider andcommunity advisory group focused on improving sickle cell disease (SCD) care, education, and research. - Population (Model)
The Clinical and Research AdvisoryGroup (CRAG) was established in 2016 as part of the NIH-funded Improving Sickle Cell Care in Adolescents & Adults in Chicago (ISAAC) initiative. Participants included researchers, healthcareproviders from four Illinois institutions, implementation science consultants, patients, andstakeholders, with additional collaboration involving partners in South Carolina. - Headline Result
The sustained collaborationimproved communication among SCD researchers, healthcareproviders, patients, and stakeholders across Illinois. Key accomplishments included establishing a Community Advisory Board (CAB), increasing patient participation in researchplanning, supporting statewide carecoordination, launching the Annual Chicago Sickle Cell Summit, creating a monthly ECHO educational seminar, and fostering increased SCD-related presentations and publications. - Why It Matters
Coordinating care and researchacross institutions remains a challenge in SCD. This study suggests that a long-term multidisciplinary advisory structure can support collaboration among clinicians, researchers, patients, andstakeholders while strengthening education, research engagement, and care coordination efforts.
- Evidence Gaps & Limitations
The study describes programmatic outcomes rather than patient-level clinical outcomes. It does not directly measure effects on healthcareutilization, disease complications, quality of life, or survival. Additional research is needed to determine whether similar advisory-groupmodels improve measurable clinical outcomes when implemented in other regions.
Source: Journal of Sickle Cell Disease- “Outcomes of a sustained multi-disciplinary advisory group in advancing sickle cell care and research”
Regulatory & Guideline Watch
Current SCD care frameworks emphasize multidisciplinary care, patient engagement, andcoordination across healthcaresettings. This study provides a real-world example of how sustained collaboration among providers, researchers, patients, andcommunity stakeholders may support these goals, suggesting a specific advisory-group model.