Clinical Trials and Studies for Mitochondrial Disease
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MitoAction would like to help patients with mitochondrial disorders to be able to participate in relevant research studies and clinical trials. Check back often for updates.
To submit a study or trial, PI's can email an IRB approved proposal to director@mitoaction.org, or mail to Cristy Balcells RN MSN 14 Pembroke Street, Medford MA 02155.
Edison Pharmaceuticals to provide expanded access to EPI-743 for mitochondrial disease
Click here to learn more.
Mayo Clinic BioBank seeking assistance
A new research resource at Mayo Clinic in Rochester, MN -- the Mitochondrial Disease Biobank -- is the first biobank in the country specifically developed to study mitochondrial diseases. Mayo Clinic is collaborating with MitoAction in hopes of identifying individuals who may be interested in participating in the Biobank.
In general, individuals who have or are suspected to have a mitochondrial disease are eligible to donate to the Mitochondrial Disease Biobank. Their family members may also be appropriate participants. Click here for more information.
North American Mitochondrial Disease Consortium Registry
The University of California-San Diego and Columbia University are currently approved to recruit patients for participation in the first mitochondrial disease consortium registry. There will be multiple sites in the United States and Canada participating in this registry but right now only UCSD and Columbia University have Institutional Review Board Approval to begin recruiting patients for this groundbreaking opportunity. Due to the time demands for this research protocol, 100 patients need to be recruited by June 15. Dr. Richard Haas is the Principal Investigator at UCSD; Dr. Michio Hirano at Columbia.
Contact Gail Reiner, MS, FNP-c, research coordinator, at gereiner@ucsd.edu, for more information.