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Meet the team behind the creation of the supporting sexuality for people with EB CPG

Updated: Feb 1, 2021

Every CPG published is the result of 18-24 months of hard work and dedication by a volunteer panel of international clinical and patient experts, and reviewers.

The application for the CPG project was approved by DEBRA International in April 2018 with funding secured from DEBRA Norway in May 2018. The CPG was submitted for publication in July 2020, accepted in December 2020, and published open access in January 2021.

For DEBRA International and the CPG world, this CPG marked a significant milestone in patient representation. For the first time ever, we had a person living with EB as a co-lead of the project, and the highest number of patient representatives in the development panel (46%) and the external review panel (30%).

The development panel was made up of 13 members and the external review panel of 10. In total, 13 countries were represented in the creation of this CPG. The development panel was successfully led by Alex King, Occupational Therapist EB Lead, Phoenix Children’s Hospital (USA) and co-led by Humphrey Hanley, person living with EB (New Zealand). Their enthusiasm, sensitivity, and guidance of the panel is reflected in their achievements.

Nationalities of the panel members involved in creating the CPG

Argentina, Australia, Brazil, Canada, Chile, Ireland, New Zealand, Norway, South Africa, Spain, Sweden, UK, and USA

Work first began through a needs assessment survey that was circulated to the international EB clinical and patient communities. The development panel conducted their first meeting in September 2018 at the DEBRA International Congress held in Zermatt, Switzerland to review the answers from the surveys and agree on the questions and issues that the CPG would address.

Panel meeting 1

Panel members L-R: Mia Werkentoft (Sweden), Florencia Pérez (Chile), Nora García (Spain), Mark Popenhagen (USA), Kerry Thompson (Australia), Ida Steinlein (Norway), and CPG Lead Alex King (USA)

Following their first panel meeting, searches of clinical literature relating to the topic of sexuality and EB were carried out. Panel members were given a select number of papers at random to review and evaluate for their level of evidence, quality, bias, and relevance to the agreed questions and issues for the CPG to address. Their second panel meeting was held over a weekend in September 2019 in Los Angeles to formulate the recommendations for the CPG from the papers that were deemed appropriate following their review.

Panel meeting 2

Panel members L-R: Mark Popenhagen (USA), Florencia Pérez (Chile), Matthew Lightfoot (UK), Kerry Thompson (Australia), CPG Co-lead Humphrey Hanley (New Zealand), CPG Lead Alex King (USA), and Julio Tanabe (USA)

This is where all the hard work culminated in the writing of the CPG manuscript. Once ready, it was circulated to an external review panel for them to review the comprehensiveness and accuracy of the interpretation of the evidence supporting the recommendations. This is also where reviewers can provide additional evidence for consideration by the development panel. The input from external reviewers is crucial and can impact on the quality of a CPG. One of the reasons DEBRA International CPGs score so highly when assessed is due to the involvement of external reviewers and their work.

In memoriam, the development panel and DEBRA International extend tremendous gratitude to development panel member, Julio Tanabe who sadly passed away during the CPG development process from EB-related complications. We would like to congratulate and thank Alex, Humphrey, and the entire development panel on completing this CPG. We would also like to thank everyone, including survey respondents and external reviewers, whose contributions were vital to this work.

You can download the CPG for free here:

If you would like to get involved in helping to create our other CPGs, you can find out more by clicking on the links here:

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