A Delphi study to identify and prioritize research areas in sickle cell disease in India

Sickle Cell Disease (SCD) poses a significant health burden in India, necessitating comprehensive research to address its complex challenges. This Delphi study engaged a diverse panel of experts and stakeholders to identify and prioritize critical research questions on SCD in India. A total of 74 experts participated in the process of prioritizing research questions in SCD. In the first Delphi round, 52 participants, including scientists, clinicians, policymakers, and representatives from governmental and non-governmental organizations, attended this meeting, where 163 SCD research areas were generated. These areas were refined by the Delphi team in consultation with the core working group, and 16 priority questions were circulated to 81 experts (of which 65 responded) for rating 3 top priority questions. The study revealed three key research priorities: implementation research considering community perceptions addressing stigma, improving diagnostic methods, and developing affordable treatment options. Experts also emphasized the need for patient-centered research, addressing psychosocial challenges, and incorporating innovative treatments and diagnostic tools. The findings provide important insights for advancing SCD research and inform the direction of future SCD research in India, focusing on early detection, innovative treatments, and patient-centered care.