An increasing number of children and adolescents seek medical care because they experience incongruence between their physical sex and their gender identity. The ESPE gender incongruence working group aims to bring together professionals involved in the care of these individuals as well as researchers to exchange knowledge, promote education and facilitate research in this field.

Sessions and meetings

Working group composition

Coordinator
  • Sabine Hannema

    Amsterdam, Netherlands

Members
  • Aneta Gawlik-Starzyk

    Katowice, Poland

  • Annette Richter-Unruh

    , Country

  • Daniel Klink

    , Country

  • Gary Butler

    London, United Kingdom

  • Hedi Claahsen-van de Grinten

    , Country

  • Kanetee Busiah

    Laussanne, Switzerland

  • Katharina Main

    , Country

  • Laetitia Martinerie

    , Country

  • Martine Cools

    Ghent, Belgium

  • Martine de Vries

    , Country

  • Nicos Skordis

    , Country

Active projects

Collaboration with Endo-ERN – EuRRECa core registry module on Gender Incongruence

The European Reference Networks (ERNs) were established with the intention of reducing health care inequalities for all patients with rare or complex conditions across the European Union (EU). Building on this initiative, the European Registries for Rare Endocrine Conditions (EuRRECa) was created to facilitate data collection and multicenter collaboration. This online platform is accessible at www.eurreb.eu, and consists of two centralized registries (the e-REC for electronic reporting of new clinical encounters, and the Core Registry to collect common core data and access the condition-specific modules). Participation in EuRRECa is open to all healthcare providers involved in endocrine care, regardless of their affiliation with Endo-ERN.

Over time the EuRRECa project evolved to encompass a broader scope, addressing all conditions that could benefit from international collaboration, and beyond European borders.

In this view, in October 2023 a module dedicated to GI was launched. The main aims are:

  1. collect demographic and numerosity data;
  2. identify differences, inconsistencies, and knowledge gaps in care across centers and countries;
  3. promote harmonization of care practices across countries;
  4. facilitate longitudinal outcome collection through international, multicenter collaboration to improve current guidelines.

Additional information can be found at https://eurreb.eu/registries/core-registry/condition-specific-modules/gender-incongruence/

If you have questions about the EuRRECa platform, you need support to obtain local ethics committee approval, or you encounter technical issues, please contact registries@lumc.nl

If you have specific questions about the GI module, please contact Dr. Silvia Ciancia at silvia.ciancia@ugent.be

Publications

ESPE and PES International Survey of Centers and Clinicians Delivering Specialist Care for Children and Adolescents with Gender Dysphoria

https://doi.org/10.1159/000496115

Endocrine Management of Transgender and Gender-Diverse Adolescents: Expert Opinion of the ESPE Working Group on Gender Incongruence and the Endo-ERN Main Thematic Group on Sexual Development and Maturation

https://doi.org/10.1159/000542904

Contact

The working group would like to compile an up-to-date email list to be held confidentially by the convener to alert for working group activities, request for participation in projects and advising on the annual general meeting. If you would like to be added to the contact group, or if you would like to receive further information on the activities of this working group please contact the coordinator Sabine Hannema (s.e.hannema@amsterdamumc.nl).