We are seeking proposals to develop international collaborative patient registries and databases to identify the determinants of the clinical manifestations and prognosis of patients with primary hyperoxaluria.
As part of its wider mission to improve the understanding and treatment of primary hyperoxaluria and related calcium oxalate kidney stone diseases, the Oxalosis & Hyperoxaluria Foundation is interested in receiving proposals from scientists and clinicians that address the issue of the influence of genetic, cultural, and environmental background on the clinical manifestations and prognosis of patients with primary hyperoxaluria. To this end, financial support will be given to international collaborative projects that develop and make use of well-defined patient cohorts covering a wide range of genetic and cultural backgrounds.
Possible questions to be addressed include, but are not limited to:
- The influence of urinary oxalate level and other urine parameters on renal outcomes.
- The influence of dietary intake on urinary oxalate level and renal outcomes.
- Genotype-phenotype correlations within and between primary hyperoxaluria types.
In countries where no such databases exist, the OHF is willing to provide funding to help local clinicians and scientists to organize collections of primary hyperoxaluria patient information into standardized registries and databases and to make this information available for approved research projects that address the issues above. A required element of a successful response to this proposal will be a detailed data-sharing plan for key data elements that are collected under this program.
Proposed timelines can be 1 to 2 years; however, additional funds will be available for registry maintenance to sites that achieve predefined benchmarks (eg, patient enrollment targets) in the first year. Successful proposals will benefit clinicians in treating primary hyperoxaluria patients and provide a framework for the evaluation of existing and potential new therapies.