Register for the Champ Foundation Registry (CFR)

If you or your child is affected by a single large-scale mitochondrial DNA deletion (SLSMD) disorder, like Pearson syndrome, KSS, or CPEO, you have the knowledge and power to advance research by your voluntary participation in the CFR. Your data can help illuminate new paths toward better treatments and a cure.


  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 

Why Register?

  1. You know your disease better than anyone
  2. You voice matters in rare disease research
  3. It's secure and easy to participate
  4. Your data can help bring us closer to a cure