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 contact@thechampfoundation.org to learn more about accessing data from the CFR. We look forward to working with you to help you study SLSMD disorders.