CORP — CORPORATE / INDUSTRY

mitoSHARE Registry & industry research venues

UMDF with Across Healthcare

Award

De-identified data access; conference engagement

Deadline

Rolling data requests

Award type

Data & infrastructure

Focus

Registries & biomarkers

mitoSHARE is a global patient-driven mitochondrial disease registry with roughly 1,600 participants, capturing demographics, barriers to care, natural history, and trial readiness under a patient-controlled consent model; researchers can request de-identified data. Related industry-facing venues are the TREAT MITO consortium for pre-competitive collaboration and data/sample access, and the UMDF Clinical Research Pavilion at the annual Mitochondrial Medicine conference, where recruiting studies meet patients and families.

Why it's in this index

BTHS patients are in scope of the registry, making it a route to natural-history data and to trial recruitment.

Who can apply

Researchers requesting de-identified/anonymized registry data; consortium and conference participation open to mito investigators.

How to apply

Data requests via the mitoSHARE page; consortium inquiries via treatmito.org.

Links & downloads

mitoSHARE ↗TREAT MITO ↗Clinical Research Pavilion ↗