The CFR Can Help Advance Your Research

The Champ Foundation Registry (CFR) aggregates data from patient-reported outcomes, medical records, and biospecimens to form a more complete picture of individuals with single large-scale mitochondrial DNA deletion (SLSMD) disorders, like Pearson syndrome, Kearns-Sayre syndrome (KSS), and CPEO. We can assist your research efforts in a number of ways:

  • Provide access to previously collected CFR data
  • Help collect new data from CFR participants
  • Help you find participants for your own study
  • Release new surveys to help you better understand SLSMD disorders

We are committed to sharing CFR data, in order to foster engagement with this rare disease. Please email to learn more about accessing data from the CFR. We look forward to working with you to help you study SLSMD disorders.