Mitochondrial Groups Launch Pilot Phase of New Patient Care Network

Several U.S.-based organizations are launching a network to unify physicians who treat people with mitochondrial disease. The goal is to design better treatment guidelines and clinical priorities, and improve standards of care for patients.

The governance board of the Mitochondrial Care Network is looking to work with a diverse group of centers for the pilot phase to determine its potential scope, long-term desired outcomes, and ways to implement new standards of care.

Weighing factors for inclusion in the pilot phase may include current and previous patient volume, what type of approach is used at the center (multidisciplinary or not, among others) and the types of support that are behind the hospital/center.

The network is a result of the collective work of the Foundation for Mitochondrial Medicine (FMM), MitoAction, the Mitochondrial Medicine Society (MMS) and the United Mitochondrial Disease Foundation (UMDF).

Clinicians who join the network will be offered scientific challenges, opportunities and rewards. Additionally, members of the network will play a key role in identifying underserved patients and providing services to them, as well as contributing to an expanding knowledge base that is being built to provide better care in the future.

“We are excited about this major collaboration among the patient advocacy groups and the MMS because the Network will help continually improve the standard of care for mitochondrial disease in the United States,” Amy Goldstein, MD, president of the Mitochondrial Medicine Society, said in a press release.

“The Network will be an organized group of individual Mitochondrial Medicine Centers (MMCs) that will build on current consensus guidelines for diagnosis and care and significantly improve patient outcomes by sharing knowledge. We strongly encourage all interested parties to apply,” she said.

The organizations behind the Mitochondrial Care Network acknowledge that more collective knowledge of treatment guidelines is necessary to improve care and develop better treatment plans that are evidence-based and not just grounded on trial-and-error methods.

“By combining our efforts and information base, the Network will offer consistency for proper evaluation and diagnosis for primary mitochondrial disease and provide comprehensive medical care to individuals with primary mitochondrial disease,” said Kira Mann, chief executive officer of MitoAction. “We are enthusiastic that the Network will address the unmet needs of clinical care for many patients with mitochondrial disease and lead to an expanding knowledge base that will result in better care for the future.”

Any clinician practicing in the United States who provides medical care to patients with mitochondrial disease can apply to join the pilot phase of the network through Feb. 28, 2018. For additional information, email [email protected].