Huma and RARE-X Partner to Accelerate Research for 9,500 Rare Diseases

Huma, Europe’s fastest-growing health technology company, is partnering with the non-profit patient advocacy group RARE-X, which runs a collaborative patient-powered data collection platform for global data sharing and analysis to accelerate treatments for rare disease.

RARE-X’s federated data platform will pair with Huma’s decentralized clinical trials platform, complete with remote monitoring and digital biomarkers. Together, they will work closely with researchers, drug developers, and patient communities to gather data from anywhere in the world and make it easier for patients and their families to share data with researchers.

Nicole Boice, Founder and CEO of RARE-X, said: “Most patients with rare diseases want to be involved in research, but they struggle to gather research-ready data, structured and safely made accessible to researchers, that could lead to real breakthroughs. Huma’s ability to gather real-world, patient-generated data from people wherever they are, is relevant for rare disease patients because it helps breakdown barriers to participation. We will have much richer information that reflects patients’ quality of life, such as how they slept or their mood that day. These are the areas that can really make a difference for patients.”

“Medical research can be overly reliant on the data from the drugs, or the lab, particularly when there are few people with lived-experience of an illness” said Patricia Bradley, Huma’s US Head of Commercial. “We need to understand real-world experiences, and our platform connects patients who might not otherwise be able to participate. We can help RARE-X advance their critical mission and, together, we can make a real difference to patients, their communities and families by helping them live longer, fuller lives.”

Boice added, “This combination of patient-generated and health system-generated data will aid more researchers studying rare diseases. This collaboration removes barriers for research and creates new ways to understand these diseases and, ultimately, find treatments.”