Critical Path Institute expands rare disease data platform through Across Healthcare partnership

Critical Path Institute and Across Healthcare have partnered to expand the Rare Disease Cures Accelerator–Data and Analytics Platform, enabling more timely access to real-world data to support rare disease research, clinical trial design, and regulatory evidence generation.

The Baseline

• Critical Path Institute and Across Healthcare have partnered to integrate patient registry data directly into the Rare Disease Cures Accelerator–Data and Analytics Platform.
• The integration will provide researchers with more timely access to de-identified real-world data while reducing reliance on periodic manual data uploads.
• The collaboration is intended to strengthen rare disease research by expanding access to standardized, analysis-ready datasets that support natural history studies, clinical trial design, and regulatory decision-making.

Critical Path Institute has announced a new collaboration to expand its Rare Disease Cures Accelerator–Data and Analytics Platform (RDCA-DAP). The partnership will integrate Across Healthcare's Matrix patient registry platform directly with the RDCA-DAP, replacing periodic manual uploads with a continuous digital pipeline for de-identified patient data. According to the organizations, this will provide researchers with faster access to more current real-world data (RWD) as it becomes available.

RDCA-DAP is one of the largest integrated data platforms for rare and orphan diseases, standardizing data from natural history studies, patient registries, and clinical trials to enable information from multiple sources to be analyzed together. The platform is intended to address one of the fundamental challenges in rare disease research, where some conditions may have only a few hundred documented patients worldwide. This can make it difficult to generate sufficiently robust datasets for research, clinical trial design, and regulatory decision-making.

Matrix, developed by Across Healthcare, is a secure, configurable patient registry platform that enables rare disease communities worldwide to collect and share research-ready patient, clinical, and RWD to support natural history studies, clinical research, regulatory evidence generation, and therapy development. Under a master data-sharing agreement, de-identified patient data from Matrix will flow directly into RDCA-DAP through a secure digital integration. The first datasets to be incorporated relate to three rare genetic disorders: Glucose Transporter Type 1 Deficiency Syndrome (GLUT1 Deficiency), RUNX1 Familial Platelet Disorder (RUNX1-FPD), and Shwachman-Diamond Syndrome (SDS). Once integrated into RDCA-DAP, the datasets can be analyzed alongside existing data to study disease progression and support the identification of measurable endpoints for future clinical trials.

The platform is hosted on the Aridhia Digital Research Environment (DRE), which provides the secure, governed infrastructure underpinning RDCA-DAP.

Commenting on the agreement, Alexandre Bétourné, Executive Director of RDCA-DAP, said:

“This master agreement with Across Healthcare’s Matrix platform lets us move data into RDCA-DAP continuously rather than in periodic batches. For communities like GLUT1 Deficiency, RUNX1-FPD, and Shwachman-Diamond Syndrome, that means researchers around the world can work with more current data.”

Jason Colquitt, CEO and Founder of Across Healthcare, added:

“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.”

The initial datasets have been contributed through collaborations with the patient advocacy organizations GLUT1 Deficiency Foundation, the RUNX1 Research Program, and the Shwachman-Diamond Syndrome Alliance. Sandra Ojeda, Science Director of the GLUT1 Deficiency Foundation, said that sharing natural history data through RDCA-DAP would create "new opportunities to identify patterns of disease progression and accelerate therapeutic development." Katrin Ericson, President and Executive Director of the RUNX1 Research Program, added that "meaningful progress depends on bringing high-quality data together securely and responsibly across the rare disease ecosystem," while Eszter Hars, CEO of the Shwachman-Diamond Syndrome Alliance, said the integration would help ensure patient-contributed data can be used to support future treatment development.