DMD Hub Gene Therapy Training Oct 2021

These are resources discussed during the DMD Hub Gene Therapy Training Day for clinical trial coordinators and research nurses in October 2021.  

• A Guide to Duchenne Muscular Dystrophy: Information and Advice for Teachers and Parents Paperback by Janet Hoskin

Research papers mentioned in Dr Jatin Pattni’s talk on psychology of clinical trials:

• Engaging Participants in Rare Disease Research: A Qualitative Study of Duchenne Muscular 
• Expectations and experiences of investigators and parents involved in a clinical trial for Duchenne/Becker muscular dystrophy
• Emotional impact of genetic trials in progressive paediatric disorders: a dose-ranging exon-skipping trial in Duchenne muscular dystrophy
• Ethical issues in clinical neuroscience research: A patient’s perspective
• Unrealistic Optimism in Early-Phase Oncology Trials
• Therapeutic misconception: hope, trust and misconception in paediatric research