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Abstract
Objective: To review current approaches for obtaining patient data in Duchenne muscular dystrophy (DMD) and consider how monitoring and comparing outcome measures across DMD clinics could facilitate standardized and improved patient care.
Methods: We reviewed annual standardized data from cystic fibrosis (CF) clinics and DMD care guidelines and consensus statements; compared current approaches to obtain DMD patient data and outcome measures; and considered the best method for implementing public reporting of outcomes, to drive improvements in health care delivery.
Results: Current methods to monitor DMD patient information (MD STARnet, DuchenneConnect, and TREAT-NMD) do not yet provide patients with comparative outcome data. The CF patient registry allows for reporting of standard outcomes across clinics and is associated with improved CF outcomes. A similar patient registry is under development for the Muscular Dystrophy Association (MDA) clinic network. Suggested metrics for quality care include molecular diagnosis, ambulatory status and age at loss of ambulation, age requiring ventilator support, and survival.
Conclusions: CF longevity has increased by almost 33% from 1986 to 2010, in part due to a CF patient registry that has been stratified by individual care centers since 1999, and publically available since 2006. Implementation of outcome reporting for MDA clinics might promote a similar benefit to patients with DMD.
GLOSSARY
- CF=
- cystic fibrosis;
- CFF=
- Cystic Fibrosis Foundation;
- DBMD=
- Duchenne and Becker muscular dystrophy;
- DMD=
- Duchenne muscular dystrophy;
- MD STARnet=
- Muscular Dystrophy Surveillance Tracking and Research Network;
- MDA=
- Muscular Dystrophy Association;
- SES=
- socioeconomic status;
- TREAT-NMD=
- Translational Research in Europe for the Assessment and Treatment of Neuromuscular Disease
Footnotes
Go to Neurology.org for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article.
- Received May 17, 2012.
- Accepted September 6, 2012.
- © 2013 American Academy of Neurology
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- Re:Clarification of the DuchenneConnect Registry
- Clarification of the DuchenneConnect Registry
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