Champ Foundation Registry

The CFR is a research study to investigate single large-scale mitochondrial DNA deletion (SLSMD) disorders, such as Pearson syndrome, Kearns-Sayre syndrome, and CPEO.

If you or your child is affected by a SLSMD disorder, you have the knowledge and power to advance research by your voluntary participation in the CFR by registering at cfr.thechampfoundation.org. Your data can help illuminate new paths toward better treatments and a cure.

Goals

The goals of the CFR include:

  1. Identify individuals with SLSMD disorders
  2. Gather data through voluntary registration, self-reported survey responses, patient-mediated medical record collection, and optional biospecimen sharing
  3. Make data available to researchers and clinicians who are studying SLSMD disorders to answer questions regarding the disease, including its causes, treatments, and other topics
  4. Be the primary hub of clinical trial recruitment for individuals with SLSMD disorders

Registration

To learn more about the CFR and to register, visit cfr.thechampfoundation.org