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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 took 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 2019

Education and Collaboration:

  • Working Group Meeting ESPE, Vienna (high attendance)
  • Open business meeting ESPE, Vienna for all working group en non-working group members (agenda below).
  • We prepared a draft agenda for the Working Group meeting in 2020, Liverpool: Topic: hormones, brains and cardiovascular morbidity.

 

Guideline development:

  • A members of our steering committee (A Gawlik) is part of the CPC committee of ESPE and contributes to the new guideline about puberty induction (‘Pubertal induction in males and females with gonadal or pituitary deficiency, and sex hormone replacement in transition and young adults’; an ERN initiative).

 

Research and Improvement in Quality of Care:

  • Our Working Group created a detailed protocol for induction of puberty based on consensus. This protocol is published in Hormone Research in 2019, (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).
  • We prepare a TS-registry in the I-DSD (I-TS). For this goal, we preparing  a grant application, together with other disciplines, (C. Gravholt (endocrinology), Niels Holmark Andersen (cardiology), Kathrin Fleischer (gynaecology) and Arlene Smyth (patient representative).    

 

 

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 Steering Committee

Coordinator

Janielle van Alfen–van der Velden

(The Netherlands)

Malcolm Donaldson

(UK)

Aneta Gawlik

(Poland)

Berit Kristrom

(Sweden)

Theo Sas

(The Netherlands)

Siska Verlinde

(Belgium)

Debbie Matthews

(UK)

Malgorzata Wasniewska

(Italy)