Clinical Practice Guideline for EB Laborataory Diagnosis
Since April 2017, Professor Cristina Has from Freiburg, Germany has successfully lead an international panel of 16 members from 13 countries. The objective of this CPG is to provide information on the laboratory diagnosis of inherited EB to improve outcomes.
They conducted their first panel meeting at the 4th Conference of EB-CLINET in 2017. This was the start of a very successful group. After this event, Dr. Lu Liu consented to co-lead and support Cristina with the CPG development. Their enthusiasm and guidance of the group is reflected in their achievements.
Cristina conducted the searches and the panel was split into teams to conduct the appraisal of the literature and summarise findings. In 2018 the panel met for a 2-day meeting to formulate the recommendations. The draft manuscript was reviewed by nine internal experts including Johann Bauer (Austria), Christine Bodemer (France), Judith Fischer (Germany), Jemima Mellerio (UK), Francis Palisson (Chile), Eli Sprecher (Israel), and Jouni Uitto, Leila Youssefian, and Hassan Vahidnezhad (USA). On the 9th of May 2019 the manuscript was accepted and the unedited version of the manuscript has been published online and is publicly available. The ‘Accepted Article’ will be replaced by the definitive version of the paper further to technical editing, typesetting, and proof correction, which will be available open access.
Currently Cristina is developing a lay summary, video summary, and slides for journal clubs. With Lu and Alexandra they will also start on a patient version. The remaining panel as well as groups of people living with EB will be invited to review them before they are shared on the DEBRA International website. They aim to have this completed by August 2019. We would like to congratulate and thank Cristina, Lu, and the panel on completing this CPG. We would also like to thank everyone who contributed to this work. It will be a great resource that will help many people living with EB around the world. This publication is also a great way to say thank you to Gabriele Pohla-Gubo for her contribution to the DEBRA International CPG project before she retires at the end of May 2019. Information adapted from report supplied by Kattya Mayre-Chilton in DEBRA International Newsletter 2019