Creating a secure platform for sharing data among rare disease patients
Privacy-Preserving Connectivity for Rare-Disease Patients
This study is creating a safe way for people with Xia-Gibbs Syndrome to share their health information, helping researchers and groups work together better to find new treatments while keeping your personal data private.
Quick facts
| Grant type | Sbir 2 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Geneial LLC NIH-funded |
| Lab location | 1 site (Missouri City, United States) |
| Project ID | NIH-10886143 on NIH RePORTER |
What this research studies
This research focuses on developing a privacy-preserving platform that allows patients with rare diseases, specifically Xia-Gibbs Syndrome, to share their data securely. By utilizing advanced cryptography and adhering to FAIR data principles, the project aims to facilitate better patient recruitment and data sharing among advocacy groups, researchers, and therapeutic developers. The goal is to overcome the challenges posed by fragmented and incomplete datasets, ultimately enhancing the potential for precision medicine and improved health outcomes for patients. The platform will be designed to ensure that patient privacy is maintained while enabling meaningful data exchange.
Who could benefit from this research
Good fit: Ideal candidates for this research are individuals diagnosed with Xia-Gibbs Syndrome or other rare diseases who are interested in participating in data sharing initiatives.
Not a fit: Patients with common diseases or those not interested in data sharing may not receive any benefit from this research.
Why it matters
Potential benefit: If successful, this research could significantly enhance the ability of rare disease patients to connect with researchers and access tailored treatments.
How similar studies have performed: While the approach of privacy-preserving data sharing is gaining traction, this specific application for rare diseases is relatively novel and untested.
Where this research is happening
Missouri City, United States
- Geneial LLC — Missouri City, United States (Active)
Researchers
- Principal investigator: Hansen, Adam Wesley — Geneial LLC
- Study coordinator: Hansen, Adam Wesley
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page below.