Skip to main content

Consensus-based care recommendations for adults with myotonic dystrophy type 1.

Publication ,  Journal Article
Ashizawa, T; Gagnon, C; Groh, WJ; Gutmann, L; Johnson, NE; Meola, G; Moxley, R; Pandya, S; Rogers, MT; Simpson, E; Angeard, N; Bassez, G ...
Published in: Neurol Clin Pract
December 2018

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.

Duke Scholars

Altmetric Attention Stats
Dimensions Citation Stats

Published In

Neurol Clin Pract

DOI

ISSN

2163-0402

Publication Date

December 2018

Volume

8

Issue

6

Start / End Page

507 / 520

Location

United States

Related Subject Headings

  • 3209 Neurosciences
 

Citation

APA
Chicago
ICMJE
MLA
NLM
Ashizawa, T., Gagnon, C., Groh, W. J., Gutmann, L., Johnson, N. E., Meola, G., … Winblad, S. (2018). Consensus-based care recommendations for adults with myotonic dystrophy type 1. Neurol Clin Pract, 8(6), 507–520. https://doi.org/10.1212/CPJ.0000000000000531
Ashizawa, Tetsuo, Cynthia Gagnon, William J. Groh, Laurie Gutmann, Nicholas E. Johnson, Giovanni Meola, Richard Moxley, et al. “Consensus-based care recommendations for adults with myotonic dystrophy type 1.Neurol Clin Pract 8, no. 6 (December 2018): 507–20. https://doi.org/10.1212/CPJ.0000000000000531.
Ashizawa T, Gagnon C, Groh WJ, Gutmann L, Johnson NE, Meola G, et al. Consensus-based care recommendations for adults with myotonic dystrophy type 1. Neurol Clin Pract. 2018 Dec;8(6):507–20.
Ashizawa, Tetsuo, et al. “Consensus-based care recommendations for adults with myotonic dystrophy type 1.Neurol Clin Pract, vol. 8, no. 6, Dec. 2018, pp. 507–20. Pubmed, doi:10.1212/CPJ.0000000000000531.
Ashizawa T, Gagnon C, Groh WJ, Gutmann L, Johnson NE, Meola G, Moxley R, Pandya S, Rogers MT, Simpson E, Angeard N, Bassez G, Berggren KN, Bhakta D, Bozzali M, Broderick A, Byrne JLB, Campbell C, Cup E, Day JW, De Mattia E, Duboc D, Duong T, Eichinger K, Ekstrom A-B, van Engelen B, Esparis B, Eymard B, Ferschl M, Gadalla SM, Gallais B, Goodglick T, Heatwole C, Hilbert J, Holland V, Kierkegaard M, Koopman WJ, Lane K, Maas D, Mankodi A, Mathews KD, Monckton DG, Moser D, Nazarian S, Nguyen L, Nopoulos P, Petty R, Phetteplace J, Puymirat J, Raman S, Richer L, Roma E, Sampson J, Sansone V, Schoser B, Sterling L, Statland J, Subramony SH, Tian C, Trujillo C, Tomaselli G, Turner C, Venance S, Verma A, White M, Winblad S. Consensus-based care recommendations for adults with myotonic dystrophy type 1. Neurol Clin Pract. 2018 Dec;8(6):507–520.

Published In

Neurol Clin Pract

DOI

ISSN

2163-0402

Publication Date

December 2018

Volume

8

Issue

6

Start / End Page

507 / 520

Location

United States

Related Subject Headings

  • 3209 Neurosciences