Clinical and Research Readiness for Spinal Muscular Atrophy: The Time Is Now for Knowledge Translation.
Kristin J KrosschellSally Dunaway YoungIlse PetersonMary CurryAllison MazzellaJill JareckiRosángel CruzPublished in: Physical therapy (2022)
Partnership among patient advocacy groups, industry collaborators, and key opinion leaders/experts can optimize essential resource development to address the knowledge gap for best practices in physical therapy. This partnership model can be replicated for other diseases, providing an efficient way to support clinical trial readiness and target early development of evidence-based content and resources related to both research and best practice clinical evaluation for physical therapist researchers, clinicians, and patients. While identifying knowledge gaps and resource development are initial steps toward change in SMA practice, a rapidly changing rehabilitation outlook warrants a call to action for enhanced efforts aimed at improving rehabilitation evaluation, assessment, and care for this population. It is critical to forge a timely path forward for development, implementation, and sustainability of effective knowledge translation to practice for SMA.
Keyphrases
- healthcare
- primary care
- quality improvement
- clinical trial
- clinical evaluation
- end stage renal disease
- palliative care
- physical activity
- newly diagnosed
- randomized controlled trial
- mental health
- ejection fraction
- chronic kidney disease
- open label
- study protocol
- patient reported outcomes
- double blind
- placebo controlled