The Champ Foundation Registry (CFR)

In 2020, The Champ Foundation launched the Champ Foundation Registry (CFR) to provide a robust, accessible dataset to families, researchers, clinicians, and companies fighting single large-scale mitochondrial DNA deletion (SLSMD) disorders. The Champ Foundation, guided by families and experts in the field, realized that poor understanding of SLSMD disorders is a major impediment to the development of new treatments and a cure. The CFR is envisioned as an online hub to unlock the knowledge of affected individuals and their families and share it with researchers and clinicians developing treatments.

The Champ Foundation was founded in 2015 in honor of William Reynolds. The Champ Foundation is a US-based 501(c)(3). Its mission is to support research toward better treatments and a cure for SLSMD disorders. The Champ Foundation administers and sponsors the CFR.

Your Data Helps Advance Research

SLSMD disorders are rare, so each participant is crucial. Researchers, clinicians, and companies need to better understand who is affected and how they are affected in order to successfully develop treatments. By voluntarily sharing information with the CFR, you can help ensure that the field is focused on aspects of the disease that are most important to those affected.

The CFR welcomes those who have been diagnosed, either clinically or genetically, with an SLSMD disorder. Registration is easy, and you can choose what information you want to share through surveys and your medical records. 

Privacy

The CFR is built to protect your data. It is compliant with HIPAA and GDPR. You may withdraw from the CFR at any time. Please review our Terms and Conditions, Privacy Policy, and Informed Consent Document.