about-us.jpg

ESPE Working Group on Turner Syndrome

Turner Syndrome (TS) girls constitute a group with multi-facet problems leading to increased morbidity including short stature, cardiovascular disorders, osteoporosis and psychosocial problems.

The aims of the Turner Syndrome Working Group are to:

  • Promote knowledge and awareness leading to early diagnosis and optimal prevention and treatment of comorbidities.
  • Provide and propagate multidisciplinary recommendations/guidelines for evaluation and treatment to optimise holistic care and improve the quality of life.
  • Collaborate with adult endocrinologists and adolescent gynaecologists to plan seamless transitions to adult life.

Programme for the Annual Meeting Symposium in Vienna

The Annual Meeting Symposium for the Turner Syndrome Working Group will take place on Thursday 19 September 2019 at 08:00-10:00 in Vienna, Austria.  

Programme for the 2019 Annual Meeting Symposium

Report on activities from 2018

Education and Collaboration:

Working Group Meeting at the ESPE in Athens (joint meeting with DSD WG). There was a high attendance at this meeting. (Topics covered: 45X/46XY DSD, gonadal malignancy risk and transition)

Open business meeting in Athens for all working group en non-working group members (minutes: see website).

We prepared a draft agenda for the TS WG meeting in 2019 (Vienna): Topic: puberty induction and fertility.

 

Guideline development:

Members of our WG contributed to the Cincinatti Guideline (Gravholt et al. 2017)

 

Research and Improvement in Quality of Care:

Our WG prepared a detailed protocol for induction of puberty based on consensus. This protocol is currently submitted for publication. To evaluate the protocol, we have prepared a multicentre study (see manuscript for details).

Pubertal induction in girls with Turner syndrome with either transdermal or oral 17-β oestradiol: a proposed strategy for comparing outcome Malcolm Donaldson, Berit Kriström, Siska Verlinde, Janiëlle van Alfen-vanderVelden, Aneta Gawlik, Marleen van Gelder and Theo Sas on behalf of the European Society for Paediatic Endocrinology Turner Syndrome Working Group.

Our WG supports studies on stability of transdermal administration of estradiol in cut pieces (submitted for publication).

Estradiol matrix patches for puberty induction: stability in cut pieces at different temperatures.

Carina Ankarberg-Lindgren, Aneta Gawlik, Berit Kriström, Laura Mazzanti, Elisabeth J Ruijgrok, Theo CJ Sas.

We are collaborating with I-DSD for  data registration and are preparing e a database for Turner syndrome (I-TS). This database will be built in 2019.  

Planned activities for 2018-2019

  • Working Group Session at 57th Annual ESPE Meeting in Athens, Greece - 27-29 September 2018.
  • Publish the study protocol of our planned data sharing project “Pubertal induction in girls with Turner syndrome with either transdermal or oral 17-β-oestradiol: a proposed strategy for comparing outcome” in Hormone Research in Paediatrics.
  • Build a database for collecting the data from “Pubertal induction in TS” study, possibly in collaboration with the DSD DWG.
  • Initiate the multi-centre data sharing project for “Pubertal induction in TS”.
  • Stimulate collaboration, training and education by clinical fellowships.
  • Encourage and facilitate clinicians and researchers in the field of TS to initiate research project “Puberty induction in TS” using the TSWG international database.
  • Integration of TS within the European Reference Network (ERN).
  • Create a platform and stimulate collaboration in research.

For further information on the activities of this Working Group please contact the Coordinator Janielle van Alfen–van der Velden at Janielle.vanalfen-vandervelden@radboudumc.nl

Working Group Members

Coordinator

Janielle van Alfen–van der Velden

(The Netherlands)

Theo Sas

(The Netherlands)

Berit Kristrom

(Sweden)

Siska Verlinde

(Belgium)

Malcolm Donaldson

(UK)

Aneta Gawlik

(Poland)

Laura Mazzanti

(Italy)

Kerstin Albertsson Wikland

(Sweden)

Carina Ankarberg–Lingdren

(Sweden)

Ece Bober

(Turkey)

Attila Buyukgebitz

(Turkey)

Jean–Claude Carel

(France)

Catherine Dacou

(Greece)

Sabine M.P.F. de Muinck Keizer–Schrama

(The Netherlands)

Lucia Ghizzoni

(Italy)

Ze'ev Hochberg

(Israel)

Alexander Kurtev

(Bulgaria)

Agota Muzsnai

(Hungary)

Ensio Norjavaara

(Sweden)

Agnes Sallai

(Hungary)

Ewa Maleka Tendera

(Poland)

Nehama Zuckerman–Levin

(Israel)

Natallia Akulevich

(Belarus)

Emma Jane Gault

(UK)

Christina Kanaka-Gantenbein

(Greece)

Jadranka Popovic

(USA)

Michael Ranke

(Germany)

Stefano Stagi

(Italy)

Malgorzata Wasniewska

(Italy)

Delphine Zenaty

(France)