Open AccessThe Cure SMA Membership Surveys: Highlights of Key Demographic and Clinical Characteristics of Individuals with Spinal Muscular Atrophy
Author(s) -
Lisa Belter,
Jill Jarecki,
Sandra P. Reyna,
Rosángel Cruz,
Cynthia C. Jones,
Mary K. Schroth,
Colleen O'Toole,
Shan O’Brien,
Susan A. Hall,
Nicole B. Johnson,
Angela D. Paradis
Publication year - 2021
Publication title -
journal of neuromuscular diseases
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.366
H-Index - 23
eISSN - 2214-3602
pISSN - 2214-3599
DOI - 10.3233/jnd-200563
Subject(s) - sma* , spinal muscular atrophy , medicine , population , disease , gerontology , physical therapy , environmental health , mathematics , combinatorics
Cure SMA maintains the largest patient-reported database for people affected with spinal muscular atrophy (SMA). In 2017, Cure SMA initiated annual surveys with their membership to collect demographic and disease characteristics, healthcare, and burden of disease information from patients and caregivers.