IndoUSrare has partnered with RARE-X to help understand India’s rare disease landscape and is conducting a feasibility study in India to understand the barriers to enabling patient-owned health data registries for national and international data sharing.
Currently, India has no law protecting patient data privacy as the Health Insurance Portability and Accountability Act (HIPAA) does in the United States, or General Data Protection Rules (GDPR) in Europe, but new legislation is proposed to help overcome this deficit.
India’s Personal Data Protection Bill, which is currently underway, would help standardize and regulate the collection, storage, sharing, and use of digital health data. As drafted, the legislation would provide patients with control over their data and allow anonymized health data to be used for public health purposes.
IndoUSrare is working with RARE-X to help assess the feasibility of a patient-owned registry in India, which can potentially serve as a model for other low- and middle-income countries. 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 US and EU, and hence are severely lacking in diversity; the Indian population is not proportionately represented in these foundational databases. In the current environment of increasingly data-driven research, this would mean that those who do not exist in these databases will not be considered in research programs relying on such high quality, curated databases. Additionally, there is increasing awareness that patients and caregivers are the best stewards of their own health information and should have the authority to share their data for research leading to the greater good of Science and Medicine.
Building on these points, RARE-X aims to create a patients-owned database for global data-sharing collaborations.
RARE-X is a non-profit created by leaders in the fields of patient advocacy, medical research, biopharma, and technology.
RARE- X is piloting a series of demonstration projects, partnering with rare disease communities, to apply technology proven in other large-scale public health and genomic data-sharing initiatives to support the global needs of those developing treatments and caring for rare disease patients.
RARE-X is leveraging existing technology powered by the Broad Institute of MIT and Harvard, which will support patients (in data collection, structuring, and responsible sharing), clinicians (in accelerating diagnosis and improving and tracking health outcomes), researchers, and biopharma (with the data they need to identify, develop and track the impact of breakthrough treatments and cures).
RARE-X is adapting proven technologies and partnering with leading experts to create a federated data analysis platform, specifically designed by rare community leaders and scaled to support the diverse and expanding needs of rare disease research, development and care, around the world and in all communities.
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