RARE Daily

IndoUSrare and Rare-X Conduct Feasibility Study for a Patient-Owned Health Data Collection Program for India

April 20, 2021

Rare Daily Staff

Patient advocacy organization IndoUSrare and the patient date platform provider Rare-X have released a feasibility study that identifies the challenges to creating patient-owned health data registries for international data sharing in emerging economies.

The India Feasibility Study Report: Patient-Owned Health Data Registries, which establishes a scoping document and blueprint for opportunities to support patient-owned data collection in India. The India study draws from a combination of literature, surveys, and stakeholder interviews from patient advocacy groups, physicians, policy professionals, and industry leaders with biopharma, diagnostic labs, and contract research organizations.

“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, founder and chairman of IndoUSrare. “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. As a result, they 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 high-quality, curated databases.

“Rare-X is being built to support a global ecosystem for data collected and shared within countries and across borders. This is critical for small disease populations in rare disease, and almost always, rare disease patient communities work with patients globally every day. The challenge becomes less about the technology and more about understanding the regulatory environment and nuances on governance by country,” said Nicole Boice, CEO of Rare-X. “We have learned a tremendous amount based on this study, and we hope that we soon have the ability to support patient-owned data collection and sharing in India as part of our commitment to IndoUSrare and their affiliate patient advocacy organizations. The need is now.”

Photo: Harsha Rajasimha, founder and chairman of IndoUSrare

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