Best practice recommendations for the clinical care of spinal bulbar muscular atrophy.

ABSTRACT:

Background

Although rare in the general population, spinal bulbar muscular atrophy (SBMA) is an X-linked recessive neuromuscular condition that is highly prevalent in people identifying as First Nations and Métis in western Canada. The aim of this guideline is to improve and standardize care of SBMA, and to increase awareness of the condition.

Methods

Our interdisciplinary working group conducted a needs assessment survey to aid in the development of guideline topic questions, followed by a literature search, evidence review, and external review by health practitioners and people with lived experience. We followed the ADAPTE framework to evaluate the only pre-existing SBMA guideline (2020 French national protocol) and the 2020 Canadian amyotrophic lateral sclerosis guideline

SUBMITTER: Schellenberg KL 

PROVIDER: S-EPMC12479135 | biostudies-literature | 2025 Sep

REPOSITORIES: biostudies-literature