SynthesisOrphanet journal of rare diseases2021
Physiotherapy for epidermolysis bullosa: clinical practice guidelines.
Synthesis in Orphanet journal of rare diseases, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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The trial behind it
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Who cites it
8 citing papers in PubMed, 17 citations in OpenAlex.
- Tips for Independent Living Despite Recessive Dystrophic Epidermolysis Bullosa: My Perspective.Pediatric dermatology · 2026Article
- Neonatal autosomal recessive dystrophic epidermolysis bullosa caused by compound heterozygousAME case reports · 2026Article
- Rehabilitation Intervention for an Infant with Simple Epidermolysis Bullosa from NICU to Home Discharge: A Case Report.Journal of clinical medicine · 2025Article
- Taking care of patients with recessive dystrophic epidermolysis bullosa from birth to adulthood: a multidisciplinary Italian Delphi consensus.Orphanet journal of rare diseases · 2025Article
- Addressing the Unmet Educational Needs of Students with Epidermolysis Bullosa in Saudi Arabia.Risk management and healthcare policy · 2025Article
- Consensus statements for the biopsychosocial care of patients with epidermolysis bullosa South Africa: Part 2.Health SA = SA Gesondheid · 2025Article
- Mesenchymal stromal cell therapy in epidermolysis bullosa: current perspectives and future directions.Frontiers in cell and developmental biology · 2025Review
- Prevention of medical adhesive-related skin injury during patient care: A scoping review.International journal of nursing studies advances · 2022Article
Corrections and comments
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Authors and funding
13 authors at 8 institutions in 5 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Epidermolysis bullosa (EB) is characterized by skin fragility with blister formation occurring spontaneously or following minor trauma such as gentle pressure or friction. Current physiotherapy practice is based on anecdotal care, clinical expertise and creative problem solving with caregivers and individuals with EB. Evidence based intervention is needed to establish a foundation of knowledge and to guide international practitioners to create and improve standards of care to effectively work with individuals living with EB. This clinical practice guideline (CPG) was created for the purpose of providing evidence based interventions and best clinical practices for the physiotherapy management of individuals with EB. A survey was conducted within the EB community and six outcomes were identified as a priority to address in physiotherapy management, including (1) attaining developmental motor milestones, (2) identifying safe and functional mobility in the natural environment, (3) encouraging ambulation endurance, (4) supporting safe ability to bear weight, (5) improving access to physiotherapy services, and (6) optimizing interaction with the community. A systematic literature review was conducted and articles were critically analyzed by an international panel consisting of thirteen members: healthcare professionals (including physiotherapist, doctors, and occupational therapist), caregivers, and individuals with EB. Recommendations were formulated from evidence and panel consensus. An external panel of twelve were invited to improve the quality and gather feedback on draft manuscript and recommendations. This CPG describes the development of recommendations for physiotherapy management including several best practice interventions. This guideline lays the foundational work for physiotherapist throughout the world to provide high quality services while improving and maintaining functional mobility and independence within the EB community. The CPG outlines limitations in the evidence available and possible future research needed to improve physiotherapy practice.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.