Practice patterns of mitochondrial disease physicians in North America. Part 2: treatment, care and management.
Mitochondrial medicine is a young subspecialty. Clinicians have limited evidence-based guidelines on which to formulate clinical decisions regarding diagnosis, treatment and management for patients with mitochondrial disorders. Mitochondrial medicine specialists have cobbled together an informal set of rules and paradigms for preventive care and management based in part on anecdotal experience. The Mitochondrial Medicine Society (MMS) assessed the current state of clinical practice including diagnosis, preventive care and treatment, as provided by various mitochondrial disease providers in North America. In this second of two reports, we present data related to clinical practice that highlight the challenges clinicians face in the routine care of patients with established mitochondrial disease. Concerning variability in treatment and preventative care approaches were noted. We hope that sharing this information will be a first step toward formulating a set of consensus criteria and establishing standards of care.
Center for Child Neurology, Cleveland Clinic Children's Hospital, Cleveland, OH, United States. Electronic address: parikhs@ccf.org.
Sumit
S
Parikh
Amy
A
Goldstein
Mary Kay
MK
Koenig
Fernando
F
Scaglia
Gregory M
GM
Enns
Russell
R
Saneto
D015444:Exercise; D006801:Humans; D019458:Insurance Coverage; D028361:Mitochondrial Diseases / Q000628:therapy*; D009656:North America; D010818:Practice Patterns, Physicians'; D014815:Vitamins / Q000008:administration & dosage; D015262:Xenobiotics / Q000008:administration & dosage
D014815:Vitamins; D015262:Xenobiotics
Clinical guidelines; Mitochondrial disease; Mitochondrial medicine