Assessment of hand contractures in epidermolysis bullosa (ACE-EB): Describing the development of a novel hand assessment for children

Nicky Jessop, Catherine Miller, Gill Smith, Gabriela Petrof, Anna E. Martinez, Department of Occupational Therapy, Great Ormond Street Hospital for Children NHS Foundation Trust, Department of Plastic Surgery, Great Ormond Street Hospital for Children NHS Foundation Trust, Department of Paediatric Dermatologist, Great Ormond Street Hospital for Children NHS Foundation Trust

Hand Therapy

Published online on April 27, 2026

Abstract

Hand Therapy, Ahead of Print.
IntroductionPatients with Severe Recessive Dystrophic Epidermolysis Bullosa (RDEB-S) develop hand contractures that progress over time and impact function and quality of life. The role of the Occupational Therapist includes hand assessment and ...