IndoUSrare and RARE-X Conduct Feasibility Study For A Patient-Owned Health Data Collection Program for India

The Two Nonprofit Organizations Have Jointly Released a Feasibility Study Evaluating the Barriers and Opportunities to Enable Patient-Driven Health Data Registries  Aliso Viejo, CA — April 20, 2021 — IndoUSrare and RARE-X partnered to understand India’s rare disease landscape and conducted a feasibility study to determine the challenges to creating patient-owned health data registries for international data sharing. The India Feasibility Study Report: Patient-Owned Health Data Registries establishes a scoping document and blueprint for opportunities to support patient-owned data collection in country. RARE-X is dedicated to enabling patient communities to more easily and securely manage aggregated, structured, de-identified data on a common platform accessible to researchers and drug developers anywhere in the world. The nonprofit is rolling out a series of demonstration projects by partnering with rare disease communities worldwide using technology proven in other large-scale public health and genomic data-sharing initiatives. RARE-X’s work will support the global needs of researchers developing treatments for rare disease patients. “IndoUSrare assessed the feasibility of patient-owned registries in India, which can potentially serve as a model for other low- and middle-income countries,” said Harsha Rajasimha, MS, PhD, Founder and Chairman of IndoUSrare, and Founder and CEO of Jeeva Informatics Solutions. “We believe RARE-X can make a significant difference for the Indian rare disease community by giving patients of Indian origin increased visibility in a global setting.” Most existing databases for rare disease biomedical research are curated in the United States and European Union. Hence, they severely lack diversity. The Indian population is not proportionately represented in these foundational databases. In the current data-driven research environment, this would mean that patients who do not exist in these databases will not be considered in research programs relying on such high-quality, curated databases. “RARE-X is being built to support a global ecosystem for data collected and shared within … Continue reading IndoUSrare and RARE-X Conduct Feasibility Study For A Patient-Owned Health Data Collection Program for India