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Figure 1. NAMDC Participating Centers. NAMDC: North American Mitochondrial Disease Consortium

The North American Mitochondrial Disease Consortium (NAMDC) was established to create a network
of clinicians and clinical investigators in North America who follow sizeable numbers of patients with
mitochondrial diseases and are interested in mitochondrial research. These “centers of excellence” collaborate
with each other and with participating patients to collect vital information and conduct research on
mitochondrial diseases. At present, NAMDC is collaborating with some of the leading researchers within the
mitochondrial community at 17 academic institutions in United States and Canada [Figure 1].

By allowing researchers to aggregate patient data and biological samples from across all member sites,
NAMDC eases some of the difficulties associated with studying these rare and diverse diseases. NAMDC is
facilitating a number of clinical trials and natural history studies that would otherwise not be feasible due to
insufficient sample size.

To join NAMDC, clinical investigators with expertise in mitochondrial diseases are required to submit an
official request to the consortium’s Principal Investigator and Program Manager explaining how the new
site will enhance the ability of the consortium to meet its goals and the commitment to comply will all
data standards and study accountability as outlined in the RDRN Policies, Procedures, and Standards. The
NAMDC Executive Committee then reviews the request and, if it is approved, forwards it to the Rare Disease
Clinical Research Network (RDCRN) Board for final approval. At a minimum, NAMDC sites are required to
fully participate in our Registry and Biorepository recruitment; to participate in other consortium activities,
including monthly NAMDC and NAMDC Fellowship meetings; and to agree to abide by our research
requirements and compliance goals.