Pain in recessive dystrophic epidermolysis bullosa (RDEB): findings of the Prospective Epidermolysis Bullosa Longitudinal Evaluation Study (PEBLES)
The frequency, severity, and impact of pain in all RDEB patients is significant, particularly in RDEB-S and RDEB-Pru. Our findings highlight that current RDEB pain management is poorly effective and that further research is needed to address this symptom.
Authors
- E. Jeffs (ORCID: https://orcid.org/0000-0001-6695-354X)
- Lesedi Ledwaba‐Chapman (ORCID: https://orcid.org/0000-0002-4192-8695)
- Anna E. Martinez (ORCID: https://orcid.org/0000-0003-1738-8008)
- Elizabeth Pillay
- Susan J. Robertson (ORCID: https://orcid.org/0000-0003-4790-9943)
- Alessandra Bisquera (ORCID: https://orcid.org/0000-0002-6639-2057)
- Yanzhong Wang (ORCID: https://orcid.org/0000-0002-0768-1676)
- Jemima E. Mellerio (ORCID: https://orcid.org/0000-0002-2670-8117)
- John A. McGrath (ORCID: https://orcid.org/0000-0002-3708-9964)
Institutions
- The Royal Melbourne Hospital (AU)
- Royal Children's Hospital (AU)
- King's College London (GB)
- Guy's and St Thomas' NHS Foundation Trust (GB)
- Great Ormond Street Hospital for Children NHS Foundation Trust (GB)
- Murdoch Children's Research Institute (AU)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2024-10-11
- DOI
- https://doi.org/10.1186/s13023-024-03349-w
- Citations
- 1
- Primary Topic
- Skin and Cellular Biology Research
- Type
- article
- Field-Weighted Citation Impact
- 0.33
Funders
- Dystrophic Epidermolysis Bullosa Research Association
- Hospital for Sick Children