Mitochondrial Care Network

The Mitochondrial Care Network (MCN) is a collaboration between mitochondrial physicians in the Mitochondrial Medicine Society (MMS) and US based patient advocacy groups MitoAction and United Mitochondrial Disease Foundation.

Each MCN site director leads a team of physicians with expertise in caring for patients with mitochondrial disease.

The network was created to help improve the quality of mitochondrial patient care and implement best practices and standards of care in mitochondrial medicine. Over time, the MCN plans to determine the gaps in mitochondrial disease care and help improve diagnosis, treatment and patient outcomes.

To become part of the network, a physician has to show:

• A commitment to and focus on mitochondrial disease clinical care, having routinely cared for a large number of patients with genetic mitochondrial diseases
• An academic and research interest in mitochondrial disease with regular scholarly activity in the field
• The presence of a team of multiple specialists at their institution knowledgeable in mitochondrial disease

The initial network was launched on June 28, 2018 after a review of applications. A request for applications was announced in January 2018 whereby any clinician in the United States who provides care to patients with mitochondrial disease could apply. Those centers with appropriate experience and expertise were chosen to participate in the pilot phase. Over the coming months, the group will begin working on assessing immediate gaps in mitochondrial clinical care.

The project is currently governed and steered by members of the patient advocacy groups and MMS including Amy Goldstein, Amel Karaa, Kira Mann, Sumit Parikh, & Phil Yeske.

The following centers and leaders were selected to participate:

Mitochondrial Medicine Centers:

• Akron Children’s Hospital, Bruce Cohen
• Boston Children’s Hospital, Irina Anselm
• Children’s Hospital Colorado and University of Colorado, Austin
  Larson
• Children’s Hospital of Philadelphia, Amy Goldstein
• Children’s Hospital of Pittsburgh, Uta Lichter
• Cleveland Clinic, Sumit Parikh
• Columbia University Medical Center, Michio Hirano
• Cooper University Hospital, Jaya Ganesh
• George Washington University/Children’s National Health System, Andrea Gropman
• Icahn School of Medicine at Mount Sinai, Pankaj Prasun & Brynn Webb
• Johns Hopkins University and the Kennedy Krieger Institute, Hilary Vernon
• Massachusetts General Hospital, Amel Karaa
• Mayo Clinic, Ralitza Gavrilova
• Seattle Children’s Hospital, Russell Saneto
• Stanford University, Gregory Enns
• University of California, San Diego, Richard Haas
• University of California, San Francisco, Renata Gallagher
• University of Maryland School of Medicine and Medical System, Carol Greene
• University of Texas McGovern Medical School, Mary Kay Koenig

Affiliate Sites:

• Children’s Hospital Los Angeles, Alvaro Serrano
• University of North Carolina School of Medicine Department of Pediatrics Division of Genetics and Metabolism, Muge Gucsavas-Calikoglu
• Children’s Mercy Hospital, Jean-Baptiste Le Pichon