OHF Global Registry Initiative
OHF Global Registry Initiative supports clinicians and scientists developing international patient registries to understand factors shaping primary hyperoxaluria manifestations and prognosis.
Funder: Oxalosis and Hyperoxaluria Foundation
Due Dates: Open (Registry proposals)
Funding Amounts: 1–2 years of support; additional registry-maintenance funding for sites meeting first-year benchmarks
Summary: Supports international collaborative patient registries and databases to identify determinants of primary hyperoxaluria manifestations and prognosis.
Key Information: Proposals must include a detailed data-sharing plan for key data elements collected under the program.
Description
The OHF Global Registry Initiative supports international collaborative patient registries and databases focused on primary hyperoxaluria. Run by the Oxalosis and Hyperoxaluria Foundation (OHF), it funds projects that develop and use well-defined patient cohorts spanning diverse genetic and cultural backgrounds. The goal is to understand how genetic, cultural, and environmental factors influence clinical manifestations and prognosis, advancing OHF’s wider mission to improve understanding and treatment of primary hyperoxaluria and related calcium oxalate kidney stone diseases.
The initiative also supports local clinicians and scientists in countries without existing databases to organize patient information into standardized registries and make it available for approved research. This work is intended to benefit treating clinicians and provide a framework for evaluating existing and potential new therapies.
