PATIENTS' DATA POWERING PROGRESS

Patient-Owned Health Data Registries –
India Feasibility Study Report

Patient-Owned Health Data Registeries

Feasibility Study

Patient-Owned Health Data Registries –
India Feasibility Study Report

Using a combination of literature surveys and stakeholder interviews, the authors evaluated India’s rare disease landscape and the barriers to enabling patient-owned health data registries for national and international data sharing. 

Authors:

I – The IndoUSrare Project Team

This study is conducted by IndoUSrare. The following team members are included in planning, analysis, execution, and preparation of deliverables

  • Nisha Venugopal, PhD. IndoUSrare Research Scientist, and Program Manager with experience in cell biology of cilium based rare diseases, and policies related to clinical trial registries. She leads the project execution on the ground in India and day-to-day operations.
  • Reena Kartha, MS, PhD. Board member of IndoUSrare and Assistant Professor and Associate Director of Center for Orphan Drug Research, University of Minnesota. She is the Scientific and Research Director at IndoUSrare, and provides clinical research expertise and advice.
  • Narayanan Govindarajan, MS. Board Member of IndoUSrare, and Leader in Bigdata and analytics technologies. He is the webmaster for the project and provides administrative and operational oversight.
  • Dr. Sundeep Agrawal, MD. Board Member of IndoUSrare and Managing Director at Colt Ventures. He provides medical and clinical oversight.
  • Harsha Rajasimha, MS, PhD. Founder of IndoUSrare and a genomics data scientist, healthcare and life science consultant with over 15 relevant publications including data standards, formats, and sharing. He serves as the Organizational sponsor and provides overall program oversight.
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