Consensus-based care recommendations for adults with myotonic dystrophy type 1.
Neurol Clin Pract
; 8(6): 507-520, 2018 Dec.
Article
en En
| MEDLINE
| ID: mdl-30588381
ABSTRACT
PURPOSE OF REVIEW Myotonic dystrophy type 1 (DM1) is a severe, progressive genetic disease that affects between 1 in 3,000 and 8,000 individuals globally. No evidence-based guideline exists to inform the care of these patients, and most do not have access to multidisciplinary care centers staffed by experienced professionals, creating a clinical care deficit. RECENT FINDINGS:
The Myotonic Dystrophy Foundation (MDF) recruited 66 international clinicians experienced in DM1 patient care to develop consensus-based care recommendations. MDF created a 2-step methodology for the project using elements of the Single Text Procedure and the Nominal Group Technique. The process generated a 4-page Quick Reference Guide and a comprehensive, 55-page document that provides clinical care recommendations for 19 discrete body systems and/or care considerations.SUMMARY:
The resulting recommendations are intended to help standardize and elevate care for this patient population and reduce variability in clinical trial and study environments.
Texto completo:
1
Colección:
01-internacional
Banco de datos:
MEDLINE
Tipo de estudio:
Guideline
Idioma:
En
Revista:
Neurol Clin Pract
Año:
2018
Tipo del documento:
Article