By Joining the OHF Patient Registry
- You Can Transform the Way New Treatments are Developed and Tested,
- Help Accelerate Breakthroughs in Treatment
- Together, We Can End Hyperoxaluria
Your Journey. Your Future. Your Registry
The OHF Patient Registry collects information on the health status of people with hyperoxaluria. This information is used to create care guidelines, assist care teams providing care to individuals with hyperoxaluria, and guide quality improvement initiatives at care centers. Researchers also use the Patient Registry to develop new treatments and design clinical trials.
Sign Me Up, Today
Patients and caregivers play an integral role in the drug development process. In rare disease, this role is particularly important because it can be especially difficult to develop and bring new investigational therapies to the market.
Once researchers identify a compound that has potential to benefit patients with a particular disease or condition, the development process begins.
Why participate in a clinical trial?
- Gaining access to new treatments that are not yet available to the public
- Obtaining expert medical care at a leading healthcare facility
- Playing an active role in your own healthcare
- Helping others by contributing to medical research
How do clinical trials work?
When you or your child participate in a clinical trial, you will meet with doctors who will talk to you about what to expect. Doctors who are running the clinical trial have strict rules for how the treatments are given. This helps to keep you and your child safe. Before the trial begins, the doctors will discuss all risks with you, and they typically will perform certain tests to understand the health of you or your child.
What are phases in a clinical trial?
Clinical trials are usually grouped into “phases,” which are stages of testing. Clinical trials in each phase are designed to answer certain questions, while trying to make sure the people taking part are kept as safe as possible. Every new treatment is tested in 3 or more phases of clinical trials before being considered reasonably safe and effective.
Where can I find a clinical trial?
For information on hyperoxaluria studies, go to ClinicalTrials.gov, a registry and results database of publicly and privately supported clinical studies conducted around the world.
The drug development process is long, expensive and requires a team working in tandem. The Oxalosis & Hyperoxaluria Foundation facilitates the development of promising new drugs, and the drug development pipeline enables you to track the progress of these potential therapies.
Nearly every hyperoxaluria drug being investigated was made possible because of the OHF’s support and its ongoing work with researchers.
Primary Hyperoxaluria Type 1
Arbor Biotechnologies ()
BioMarin (BMN 255)
Novo Nordisk/Dicerna (Nedosiran)
Primary Hyperoxaluria Type 1
The 14th International Hyperoxaluria Workshop is recognized globally as the largest professional event in which leading stakeholders come together to explore clinical advances, cultural trends, and current research outcomes that will inform our work and provide better care to those facing the challenges of hyperoxaluria diseases.
The Oxalosis & Hyperoxaluria Foundation disburses grants and funding to researchers who study the causes of hyperoxaluria and its treatment.