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Patient care standards for primary mitochondrial disease: a consensus statement from the Mitochondrial Medicine Society.

ABSTRACT: The purpose of this statement is to provide consensus-based recommendations for optimal management and care for patients with primary mitochondrial disease. This statement is intended for physicians who are engaged in the diagnosis and management of these patients. Working group members were appointed by the Mitochondrial Medicine Society. The panel included members with several different areas of expertise. The panel members utilized surveys and the Delphi method to reach consensus. We anticipate that this statement will need to be updated as the field continues to evolve. Consensus-based recommendations are provided for the routine care and management of patients with primary genetic mitochondrial disease.

SUBMITTER: Parikh S

PROVIDER: S-EPMC7804217 | biostudies-literature | 2017 Dec

REPOSITORIES: biostudies-literature

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Patient care standards for primary mitochondrial disease: a consensus statement from the Mitochondrial Medicine Society.

Parikh Sumit S Goldstein Amy A Karaa Amel A Koenig Mary Kay MK Anselm Irina I Brunel-Guitton Catherine C Christodoulou John J Cohen Bruce H BH Dimmock David D Enns Gregory M GM Falk Marni J MJ Feigenbaum Annette A Frye Richard E RE Ganesh Jaya J Griesemer David D Haas Richard R Horvath Rita R Korson Mark M Kruer Michael C MC Mancuso Michelangelo M McCormack Shana S Raboisson Marie Josee MJ Reimschisel Tyler T Salvarinova Ramona R Saneto Russell P RP Scaglia Fernando F Shoffner John J Stacpoole Peter W PW Sue Carolyn M CM Tarnopolsky Mark M Van Karnebeek Clara C Wolfe Lynne A LA Cunningham Zarazuela Zolkipli ZZ Rahman Shamima S Chinnery Patrick F PF

Genetics in medicine : official journal of the American College of Medical Genetics 20170727 12

The purpose of this statement is to provide consensus-based recommendations for optimal management and care for patients with primary mitochondrial disease. This statement is intended for physicians who are engaged in the diagnosis and management of these patients. Working group members were appointed by the Mitochondrial Medicine Society. The panel included members with several different areas of expertise. The panel members utilized surveys and the Delphi method to reach consensus. We anticipa ...[more]

PMID: 28749475

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Project description:BackgroundReporting guidelines for different study designs are currently available to report studies with accuracy and transparency. There is a need to develop supplementary guideline items that are specific to areas within Pediatric Dentistry. This study aims to develop Reporting stAndards for research in PedIatric Dentistry (RAPID) guidelines using a pre-defined expert consensus-based Delphi process.MethodsThe development of the RAPID guidelines was based on the Guidance for Developers of Health Research Reporting Guidelines. Following a comprehensive search of the literature, the Executive Group identified ten themes in Pediatric Dentistry and compiled a draft checklist of items under each theme. The themes were categorized as: General, Oral Medicine, Pathology and Radiology, Children with Special Health Care Needs, Sedation and Hospital Dentistry, Behavior Guidance, Dental Caries, Preventive and Restorative Dentistry, Pulp Therapy, Traumatology, and Interceptive Orthodontics. A RAPID Delphi Group (RDG) was formed comprising of 69 members from 15 countries across six continents. Items were scored using a 9-point rating Likert scale. Items achieving a score of seven and above, marked by at least 70% of RDG members were accepted into the RAPID checklist items. Weighted mean scores were calculated for each item. Statistical significance was set at p < 0.05 and one-way ANOVA was used to calculate the difference in the weighted mean scores between the themes.ResultsThe final RAPID checklist comprised of 128 items that were finalized and approved by the RDG members in the online consensus meeting. The percentage for high scores (scores 7 to 9) ranged from 69.57 to 100% for individual items. The overall weighted mean score of the final items ranged from 7.51 to 8.28 (out of 9) and the difference was statistically significant between the themes (p < 0.05).ConclusionsThe RAPID statement provides guidance to researchers, authors, reviewers and editors, to ensure that all elements relevant to particular studies are adequately reported.

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Dataset Information

Patient care standards for primary mitochondrial disease: a consensus statement from the Mitochondrial Medicine Society.

Publications

Patient care standards for primary mitochondrial disease: a consensus statement from the Mitochondrial Medicine Society.

Similar Datasets

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