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 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 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.”
The India Feasibility Study Report 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.
A complimentary copy of India Feasibility Study Report: Patient-Owned Health Data Registries can be found at rare-x.org.
RARE-X is a 501(c)(3) patient advocacy organization focused on supporting the acceleration and development of life-altering treatments and future cures for patients impacted by rare disease. Enabled by best-in-class technology, patients, researchers, and other technology vendors, RARE-X will gather structured, fit-for-purpose data to share broadly, benefitting from 21st-century governance, consent, and federated data sharing technology. RARE-X is building the largest collaborative patient-driven, open-data access project for rare diseases globally. For more information, visit rare-x.org.
IndoUSrare (Indo US Organization for Rare Diseases) is a 501(C)(3) patient advocacy organization focused on accelerating life-saving therapies for rare diseases by building collaborative bridges between the USA and the Indian subcontinent for education, advocacy, & research. IndoUSrare focuses on the diverse needs of patients represented by its growing list of member organizations in the US, India, and globally. For a full list of member organizations and programs, visit indousrare.org.
Tom Hume, Marketing Communications – RARE-X