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.
Cure Mito Leigh Syndrome Registry
Help us bring patients, families, and researchers together to gain a better understanding of Leigh Syndrome. If you or a family member has been diagnosed anywhere in the world with Leigh Syndrome, please enroll in the patient registry to make an important contribution to Leigh Syndrome research.
The Cure Mito Foundation is partnering with Sanford CoRDS to create the registry. Sanford CoRDS supports and enables rare disease communities to build robust registries, providing researchers with the information they need to drive research forward.
Global Mitochondrial Disease Patient Registry
A patient-driven independent registry, where data are entered, stored and managed by the patients themselves but are also linked to the clinician-driven global registry.
LHON – Data Collection Program
Leber Hereditary Optic Neuropathy (LHON) patients, families, and communities are excited to participate in data collection to expand and improve medical research. By coming to this site, you can begin the first step in making your patient information available to researchers. By generating the most comprehensive LHON Data Collection Program, we can accelerate research and the development of new drugs, devices, or other therapies. Only you hold the key to unlock future discoveries.
Mito Canada Patient Registry
Are you living with a mitochondrial disease? Improve Care – Support Research – Stay Informed. Consider enrolling in the MitoCanada Patient Contact Registry!
Mito Foundation AU Registry
The Mito Registry collects important information about Australians with confirmed or suspected mitochondrial disease (mito) for the purpose of research into treatments and cures.
The primary aim of the Mito Registry is to establish a significant base of patient data to attract clinical trials to Australia, ensuring our mito community benefits from the latest developments in mito medicines and treatment.
mitoSHARE: UMDF’s Patient-Driven Registry
mitoSHARE is a worldwide patient-populated registry initiative stewarded by UMDF. The goal of the registry is to advance scientific research using data gathered from patients and families affected by mitochondrial disease. With every new registry participant, we gain a better understanding of the disease, which in turn facilitates diagnoses, treatments and cures, and improved standards of clinical care.
North American Mitochondrial Disease Consortium
Mitochondrial diseases present a challenge because they are probably the most diverse human disorders at every level: clinical, biochemical, and genetic. Although severity varies, by and large these are progressive and often crippling disorders. The NAMDC, working closely with the United Mitochondrial Foundation (UMDF), is working to address these difficult issues.