Infrastructure Projects

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 The research landscape for mitochondrial disease is complex. TREAT MITO represents a broad consortium dedicated to the development of therapeutics for mitochondrial disease, including: 

For almost three decades, the United Mitochondrial Disease Foundation has maintained four pillars of focus for the mitochondrial disease community, including research, support, education, and advocacy. As the largest global, non-governmental funder of mitochondrial disease research in the world, UMDF has provided financial support for research through grants and collaborative initiatives, while also acting as a bridge between researchers, clinicians, patients, and other stakeholders, fostering collaboration and knowledge exchange. Learn more at umdf.org.  

In 2018, patient advocacy groups teamed with the Mitochondrial Medicine Society (MMS) to help create the Mitochondrial Care Network, a group of physicians at medical centers across the country that have expertise and experience in providing coordinated, multidisciplinary care for patients with genetic mitochondrial disease. As part of joining, the institution must have routinely cared for a large number of patients with genetic mitochondrial diseases, have academic and research interest in mitochondrial disease with regular scholarly activity in the field, and boast multiple specialists at their institution knowledgeable in mitochondrial disease. There are currently 18 MCN sites, with more on the way. Learn more at mitonetwork.org.  

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 involved or interested in mitochondrial research. NAMDC has also created a patient clinical registry in the hopes of standardizing diagnostic criteria, collecting important clinical information, and facilitating the participation of patients in research on mitochondrial diseases; established a repository for specimens and DNA from patients with mitochondrial diseases; conducts clinical trials and other research activities; and makes biostatisticians, data management experts, and specialists in clinical research available to participating physicians, so that research conducted through the NAMDC can make the most efficient and innovative use of patient participation. Learn more at namdc.rarediseasesnetwork.org.  

Founded in 1998 by doctors Richard Haas and Robert Naviaux, the Mitochondrial Medicine Society represents an international group of physicians, researchers and clinicians working towards advancing education, research and global collaboration in clinical mitochondrial medicine. Learn more at mitosoc.org. 

mitoSHARE, UMDF’s global patient registry, is a worldwide research database for patients (both living and deceased) with any form of mitochondrial disease as well as their caregivers. mitoSHARE boasts nearly 1,600 participants who take part in surveys and studies on a range of topics such as demographics, barriers to care, natural history, and clinical trials. With every new registry participant, researchers gain a better understanding of the disease, which in turn facilitates diagnoses, treatments and cures, and improved standards of clinical care. Learn more at umdf.org/mitoSHARE.  

The Mitochondrial Disease Sequence Data Resource, or MSeqDr, is designed to aggregate as much genomic data as possible into a central repository. Using that data, researchers believe they can find new forms of mitochondrial disease and provide a clearer diagnosis to patients, which in turn will aid in clinical care. Learn more at mseqdr.org. 

TREAT MITO is committed to working side-by-side with industry to help ensure the successful approval of therapeutics for mitochondrial disease. In exchange, we ask industry partners to share clinical data learnings to help us improve future studies.  

Data and information gathered from existing platforms is funneled through The Mito Nexus, a cloud-based federated, HIPPA and GPDR compliant database. Mito Nexus is the Global Mitochondrial Disease Data hub allowing the community platforms to communicate, collaborate, collect, analyze, share, and store data securely. Learn more at mitonexus.net.