Privacy-preserving connectivity for rare-disease patients
Ended Project Grant Awarded Last action
- Award ID
- R44HG012288
- Recipient
-
Geneial LLC UEI RG9ZC5CLCH56
- Awarding agency
-
National Human Genome Research Institute
National Institutes of Health, Department of Health and Human Services
- Obligated
- $2,000,000
Award facts
- Assistance listing
- 93.172 Human Genome Research
- Completion date
- Originally
- Place of performance
- Texas, USA
Award details come from USAspending.gov.
Description
- Abstract
- / summary safeguarding privacy of data assets - while simultaneously facilitating data sharing and exchange - is paramount to sustaining the value creation of genomics for precision medicine and population health. One of the most significant challenges for XIA-gibbs syndrome (XGS) research and rare disease studies in general is the lack of integrated, privacy-preserving platforms to facilitate efficient patient recruitment and data sharing. Rare disease datasets are fragmented, incomplete, and sparse. These barriers to data accessibility prevent efficient data aggregation, translation to clinical benefits, and disease promotion to the global patient and scientific communities. Without data sharing mechanisms that align incentives while preserving security and privacy, fragmented and siloed data will severely limit the value of genomic medicine in the future. We aim to address these issues by designing and developing components enabling a computationally feasible privacy-preserving rare disease community engagement platform, emphasizing fair (findable, accessible, interoperable, reusable) data principles. Specifically, we will deploy innovative cryptography technologies in the context of a web application streamlining interaction, data exchange, and analysis between patients, advocacy groups, researchers, and therapeutic developers. Building on our current secure, hipaa-compliant infrastructure, in phase i of this fast-track proposal we will onboard our existing XGS registry to establish proof-of-concept while ensuring the platform is readily generalizable to other rare diseases. In phase II, as we onboard two additional rare disease communities, we will implement software optimizations and GPU-acceleration to ensure the platform can scale to a data privacy- and ownership-preserving engagement platform and registry applicable to all rare disease communities and datasets. Ultimately, the approaches developed here will allow researchers and therapeutic developers expanded ability to search for and retrieve essential patient data for rare disease research. We anticipate the creation of such a tool will accelerate the growth of rare disease registries worldwide, creating positive externalities benefitting the entire industry by enabling widespread access to previously inaccessible data.
Transactions
| Action | Obligated | Date |
|---|---|---|
| Amendment | $0 | |
| Amendment | $0 | |
| Amendment | $1,000,000 | |
| Original award | $1,000,000 |
Quick answers
Who received award R44HG012288?
R44HG012288 was awarded to Geneial LLC by National Human Genome Research Institute (National Institutes of Health) on September 1, 2022.
How much is award R44HG012288 worth?
$2,000,000 has been obligated on R44HG012288.
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