New agreement will feed de-identified patient data continuously into RDCA-DAP, giving researchers faster access to real-world evidence for three rare diseases
TUCSON, Ariz., July 21, 2026 — Critical Path Institute (C-Path), a nonprofit that builds data and analytics tools to speed drug development, today announced a partnership with Across Healthcare’s Matrix platform to expand its Rare Disease Cures Accelerator–Data and Analytics Platform (RDCA-DAP). Under a new master data-sharing agreement, de-identified patient data from Matrix will flow into RDCA-DAP through a direct digital integration, a continuous pipeline rather than a periodic, manual upload. The result is a faster, more current stream of real-world data for researchers studying rare diseases and developing treatments for them.
RDCA-DAP is one of the largest integrated data platforms of its kind for rare and orphan diseases. It standardizes patient data from disparate sources, natural history studies, patient registries and clinical trials, so researchers can analyze it together, a task that is otherwise difficult in a field where any single rare disease may have only a few hundred documented patients worldwide. The platform is designed to support natural history studies (research that tracks how a disease progresses without treatment) to established data-quality standards, with the aim of making that data usable for clinical trial design and regulatory review.
The first datasets moving through the new pipeline cover three rare genetic conditions: Glucose Transporter Type 1 Deficiency Syndrome (GLUT1 Deficiency), a metabolic disorder that impairs glucose transport to the brain; RUNX1 Familial Platelet Disorder (RUNX1-FPD), an inherited blood disorder that raises the risk of leukemia; and Shwachman-Diamond Syndrome (SDS), a disorder affecting bone marrow, the pancreas, and skeletal development. Once integrated into RDCA-DAP’s analytics hub, researchers will be able to cross-reference this data with other sources in the platform to study disease progression and help identify measurable endpoints for future clinical trials.
“This master agreement with Across Healthcare’s Matrix platform lets us move data into RDCA-DAP continuously rather than in periodic batches,” said RDCA-DAP Executive Director Alexandre Bétourné, Ph.D., Pharm.D. “For communities like GLUT1 Deficiency, RUNX1-FPD, and Shwachman-Diamond Syndrome, that means researchers around the world can work with more current data. We’re grateful to Matrix and to the patient-led organizations that made this possible.”
“Our team works closely with C-Path to ensure our platform is on the leading edge of interoperability,” said CEO and Founder of Across Healthcare Jason Colquitt. “We’re committed to supporting rare disease communities involved in every key stage of the research process, from the earliest days of data collection to regulatory review. We want this partnership to lead the industry in data accessibility, and we’re expanding our efforts to grow a connected ecosystem that will benefit patients across the globe.”
Matrix and RDCA-DAP credit the participation of three patient advocacy organizations for making the datasets available: the GLUT1 Deficiency Foundation, the RUNX1 Research Program and the Shwachman-Diamond Syndrome Alliance.
“This is an important step toward transforming patient experiences into scientific discoveries,” said GLUT1 Deficiency Foundation Science Director Sandra Ojeda, Ph.D. “By sharing de-identified Matrix natural history data through the RDCA-DAP platform, we are creating new opportunities to identify patterns of disease progression and accelerate therapeutic development. This effort reflects the GLUT1 Deficiency Foundation’s commitment to open science, patient-centered research, and turning community participation into progress toward treatment development. Data contributed by our community brings us closer to more effective treatments, better-designed clinical trials, and ultimately improved outcomes for people living with GLUT1 Deficiency. We are grateful to C-Path and Across Healthcare for this support and these opportunities.”
“No single organization can collect enough information to fully understand a rare disease,” said RUNX1 Research Program President and Executive Director Katrin Ericson, Ph.D. “Meaningful progress depends on bringing high-quality data together securely and responsibly across the rare disease ecosystem. This partnership represents an important step toward transforming individual datasets into a richer, more complete picture that can support research, clinical trial readiness, and ultimately better outcomes for people living with RUNX1 Familial Platelet Disorder.”
“Rare disease research keeps running into the same problem: patients are hard to find, and their data is hard to align,” said Eszter Hars, Ph.D., CEO of SDS Alliance. “At SDS Alliance, we’ve always wanted to close that gap while building the infrastructure to pool data with others, so SDS patients’ contributions can go further, faster. This integration with Matrix and RDCA-DAP moves us closer to that goal, in service of accelerating treatments that give our families more birthdays to celebrate.”
Organizations interested in contributing data to C-Path can visit c-path.org/rdca-dap or email rdcadap@c-path.org. RDCA-DAP is open and accepting applications for use; researchers can apply at portal.rdca.c-path.org.
About Critical Path Institute
Founded in 2005, as a public-private partnership in response to the FDA’s Critical Path Initiative, C-Path’s mission is to lead collaborations that advance better treatments for people worldwide. Globally recognized as a pioneer in accelerating drug development, C-Path has established numerous international consortia, programs and initiatives that currently include more than 1,600 scientists and representatives from government and regulatory agencies, academia, patient organizations, disease foundations and pharmaceutical and biotech companies. With dedicated team members located throughout the world, C-Path’s global headquarters is located in Tucson, Arizona, and C-Path’s Europe subsidiary is headquartered in Amsterdam, Netherlands. For more information, visit c-path.org.
Critical Path Institute is supported by the Food and Drug Administration (FDA) of the Department of Health and Human Services (HHS) and is 43% funded by the FDA/HHS, totaling $20,724,703, and 57% funded by non-government source(s), totaling $27,346,613. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, FDA/HHS or the U.S. Government.
About Matrix
Matrix, developed by Across Healthcare, is a secure, configurable research and patient registry platform designed to help rare disease communities collect, manage, and share high-quality patient-reported, clinical, and real-world data. Built to support global participation, longitudinal data collection, consent management, and research-ready datasets, Matrix enables patient advocacy organizations, researchers, clinicians, and industry partners to collaborate around trusted data infrastructure. The platform currently supports hundreds of rare disease communities worldwide and is used to advance natural history studies, clinical research, regulatory evidence generation, and therapy development efforts.
Media Contacts:
Roxan Triolo Olivas
C-Path
520.954.1634
rolivas@c-path.org
Kissy Black
C-Path
615.310.1894
kblack@c-path.org
