Research News: A PPL WG audit of patients with pediatric and primary lymphedema

A new article titled Paediatric lymphoedema: An audit of patients seen by the paediatric and primary lymphoedema group of vascular European Reference Network (VASCERN) has been published in the VASCERN Special Issue of the European Journal of Medical Genetics. It is co-authored by members of the Pediatric and Primary Lymphedema Working Group (PPL WG).

Primary lymphedema covers a group of rare genetic conditions that cause abnormal development or function of the lymphatic system and manifest clinically as chronic edema. Secondary lymphedema is a chronic edema caused by injury to a previously normal lymphatic system. In children, secondary lymphedema is also a rare disease. There is little data on the overall prevalence of lymphedema in children, as well as the different types of paediatric lymphedema treated by specialist centers. As a result of this limited data, the PPL-WG conducted a research into the profile of children with primary and secondary lymphedema treated by the various expert centres located in Europe and the UK.

This study analyses the profile of children with primary and secondary lymphedema who were treated at the several top-notch facilities in Europe and the UK that are a part of the VASCERN PPL group. It also compares the profiles between different countries and categories of primary lymphedema.

Read full article here

We applaud the PPL WG for this publication, which underscores the need to improve the referral to the expert centers and the consistency of service delivery for pediatric lymphedema in Europe.

Reference: Nele Devoogdt, Malou Van Zanten, Robert Damstra, Kirsten Van Duinen, Janine L. Dickinson-Blok, Sarah Thomis, Guido Giacalone, Florence Belva, Sinikka Suominen, Heli Kavola, Michael Oberlin, Jochen Rossler, Tanja Planinsek Rucigaj, Katie Riches, Sahar Mansour, Kristiana Gordon, Stéphane Vignes, Vaughan Keeley (2022). Paediatric lymphoedema: An audit of patients seen by the paediatric and primary lymphoedema group of vascular European Reference Network (VASCERN), European Journal of Medical Genetics. Volume 65, Issue 12. Available here https://doi.org/10.1016/j.ejmg.2022.104641