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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.

 

Dear ESPE Friends, Colleagues and members of the ESPE Turner syndrome working group (TSWG),

We are delighted to have the opportunity to meet again during the ESPE-congress in Rome this September and are very much looking forward meeting you in person!  Below is some information on the Turner syndrome working group session in Rome, and also the agenda for our business meeting during which we will inform you about and discuss our various activities.

 

Turner syndrome WG session

Date: Thursday 15 September

Time: 8.00-9.30 h

Location: Session room 1 at the ESPE 2022 venue

 

This year’s ESPE TSWG session promises to be very interesting and highly relevant to clinicians.

The first half of the session is devoted to the topic of fertility preservation, an area which girls and families are becoming increasingly aware of. Janiëlle van der Velden and her colleagues from Nijmegen in the Netherlands will be presenting their experience with ovarian tissue preservation and how this intervention is viewed by professionals and families.

In the second half of the TSWG session Faisal Ahmed will discuss the new i-TS registry which is being built within the well-established i-DSD registry. The i-TS registry includes a basic module with general patient characteristics as well as a module for longitudinal data collection for general patient management or studies that need long term follow up data. The i-TS registry will enable data from patients within and beyond Europe to be collected prospectively. Research proposals can be offered to the project management team through the website (home.i-dsd.org/procedure-for-obtaining-registry-data-for-research/). Optimal induction of puberty in TS remains a controversial area, with little data available on outcomes using oral and transdermal oestradiol. Also, many countries are experiencing difficulty in obtaining appropriate estrogen preparations for their patients. We are proposing to begin a longitudinal study, using the i-TS registry, so that outcomes with oral and transdermal induction can be compared. All centres are invited to include data.  

Aneta Gawlik will present the data from an ESPE survey examining the current availability of estrogen and progesterone preparations in Europe.

 

Here is the agenda:

 

 

Title

Speaker

 

Ovarian Tissue Cryopreservation for fertility preservation in girls with Turner syndrome (TurnerFertility trial): opportunities and limitations.

Chairs: Malcolm Donaldson (Glasgow, UK) and Malgorzata Wasniewska (Messina, Italy)

 

#1

Lessons learned from patients, parents and professionals

Sanne van der Coelen,

Nijmegen, the Netherlands

 

#2

Outcome and clinical implications of the TurnerFertility trial

Janielle van der Velden,

Nijmegen, the Netherlands

 

#3

Results from xenografting of ovarian tissue from patients with Turner syndrome

Sapthami Nadesappilai,

Nijmegen, the Netherlands

 

#4

Plenary discussion

 

 

 

 

Report on Turner Working Group activities

Chairs: Malcolm Donaldson (Glasgow, UK) and Malgorzata Wasniewska (Messina, Italy)

 

#6

The I-TS registry: an excellent platform for collaborative research and improvement of quality of care

Faisal Ahmed,

Glasgow, UK

#7

Availability of transdermal and oral estradiol and progesterone preparations in Europe

Aneta Gawlik,

Katowice, Poland

#8

Closing Remarks

Chairs

 

 

Turner WG business meeting

Date: Thursday 15 September

Time: 13.30-15.00 h

Location: Session room 5 at the ESPE 2022 venue

 

This business meeting, the first face-to-face event since 2019, will be devoted to the evaluation of the TSWG activities, discussion about future plans, and ideas for further collaboration and networking. This is an open meeting – everyone is welcome!

 

We are very pleased to let you know that colleagues from the special interest group (SIG) Turner syndrome from the Pediatric Society of Endocrinology (PES) of the United States of America will attend the meeting as well.

 

The agenda is included below:  

  • Introduction
  • Evaluation of the ESPE TSWG session in Rome, 2022; and ideas for the TSWG session at The Hague in the Netherlands during ESPE 2023
  • Suggestions for collaborative projects between ESPE TSWG and the SIG Turner syndrome of the PES
  • Announcement of the planned Turner guideline meeting in Aarhus, Denmark in 2023 (in collaboration with PES and other groups)
  • An update on the I-TS platform
  • Evaluation of the TSWG steering committee: rotation of role of coordinator (vacancy), and invitation for new members.

 

We hope to see you all at ESPE and in our meetings!

 

Best wishes,

 

Janiëlle van der Velden

 

On behalf of the TSWG Steering Committee: Malcolm Donaldson (UK), Aneta Gawlik (Poland), Birgit Kristrom (Sweden), Debbie Matthews (UK), Theo Sas (The Netherlands), Janiëlle van der Velden (the Netherlands, coordinator), Siska Verlinde (Belgium) and Malgorzata Wasniewska (Italy)

 

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)