Global Genes Partners with Citizen Health to Power RARE-X Rare Disease Data Platform
核心洞察
Global Genes (搜索) has entered a strategic partnership with Citizen Health (搜索) to provide the technology behind RARE-X (搜索), its rare disease (搜索) data collection program serving more than 10,000 participants across 135 patient advocacy communities.
The collaboration combines RARE-X (搜索)'s rare disease (搜索) instrument library with Citizen Health (搜索)'s ability to retrieve medical records from over 4,000 U.S. institutions, building longitudinal datasets averaging more than 10 years of information.
RARE-X (搜索) participants gain access to Ari (搜索), Citizen Health (搜索)'s AI teammate, which gathers medical records, tracks symptoms, and manages insurance denials and paperwork by text.
Global Genes (搜索) has entered a strategic partnership with Citizen Health (搜索) to provide the technology behind RARE-X (搜索), its rare disease (搜索) data collection program, the organizations announced on September 8, 2026. RARE-X serves more than 10,000 participants in collaboration with 135 patient advocacy communities, with roughly 38 percent of participants residing outside the United States. The selection will be announced live at Global Genes' RARE Drug Development Symposium in Boston.
RARE-X (搜索) will continue to operate as its own fully independent research platform under Global Genes (搜索), which continues to set the RARE-X research agenda and govern the data. The move to Citizen Health (搜索)'s platform opens new opportunities to collect and connect data across more rare disease (搜索) communities, while providing immediate value to patients.
Combining Patient-Reported and Clinical Data
RARE-X (搜索) has spent years building an instrument library specifically for rare diseases, capturing symptom severity, progression and burden of illness in structured form, including validated instruments and custom surveys. Citizen Health (搜索) can retrieve participants' medical records from more than 4,000 U.S. institutions on their behalf and organize them into datasets averaging over 10 years of longitudinal information, including genetics, full clinic notes, and imaging.
These two datasets — the lived experience patients report over time alongside clinical data — build a far more comprehensive picture to inform research and drug development. Over time, the aim is to stop asking participants to re-enter what a medical record already contains, and instead put that time toward augmenting it: capturing what the record cannot and correcting what it gets wrong or leaves out. By using standardized, research-grade measures, RARE-X (搜索) enables the robust collection of regulatory-grade patient experience data needed for clinical trials and beyond.
Introducing Ari, an AI Teammate for Families
RARE-X (搜索) participants will also have the option to use Ari (搜索), Citizen Health (搜索)'s AI teammate. Ari gathers medical records from every provider and works over text, turning daily symptoms into trends, prepping families for appointments, finding public benefits they qualify for, and taking on insurance denials and school paperwork. Ari is an added benefit immediately available to all RARE-X participants. Participants control their information across both platforms and can opt in or out of data sharing for research at any time.
Reducing the Burden on Families
The partnership is also a commitment to change what research asks of families. Caregivers of a child with a rare disease (搜索) provide an average of 53 hours of care a week, compared with 30 hours for caregivers of children generally, according to a study by Global Genes (搜索) and the National Alliance for Caregiving. Research participation asks them for more on top of that, some of it involving describing what their own clinicians may have already documented. The families with the most to contribute are often the least able to, due to the burden placed on them through traditional research methods.
"RARE-X (搜索) was built with our patient advocacy partners, and that commitment continues with this partnership. We've looked hard at what our communities need. Comprehensive data bringing together patient-reported experience and clinical records will accelerate urgently needed progress in rare diseases. We are dedicated to partnering with communities to collect this critical data while making it easier for participants to provide it. Citizen Health (搜索) is a unique and forward looking partner rethinking how data gets collected, and has built a product specifically for the rare disease (搜索) community," said Charlene Son Rigby, Chief Executive Officer, Global Genes (搜索).
Benefits for Researchers and Communities
For researchers, cohorts can be defined by diagnosis, genetic variant, symptom profile, treatment history and consent status in a single query rather than assembled across disconnected sources. When de-identified data is licensed for research, a share of the revenue returns to the patient advocacy groups and patients who generated it. Citizen Health (搜索) has already distributed more than $1 million to rare disease (搜索) communities.
"Global Genes (搜索) has built the connective tissue of this field, with more than 90 organizations across thousands of diseases that would otherwise be working alone. We bring the technology and a commitment to building something families will actually want to use. We both want the same two things at once: to make a patient's day easier now, and to get better treatments to them faster. Those tend to be treated as separate goals. They are not," said Farid Vij, Co-Founder and Chief Executive Officer, Citizen Health (搜索).
This is the first of several changes the two organizations intend to make to how rare disease (搜索) research is conducted. Global Genes (搜索) serves the more than 400 million people around the globe, and the nearly one in 10 Americans affected by rare diseases.