What are the aims of the Turner syndrome working group of ESPE?
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.
- Promote research activity in Turner syndrome.
- Support the further education of health care professionals and families.
- 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.
- Promote cooperation with other societies and other specialities.
A brief history of The Turner Syndrome Working Group of ESPE
The TSWG of ESPE was formed in 2005 by Professor Catherine Dacou-Voutetakis from Greece with other ESPE members following a proposal by Professor Ze’ev Hochberg. The group organises a symposium just before the beginning of each annual meeting and there is now a list of 29 members, of whom nine serve on the Steering Committee. Some of the topics presented and discussed at the Working Group meetings in recent years include strategies with fertility treatment, including oocyte and ovarian cryopreservation; the creation of an I-TS platform within International Registry of Disorders of Sex Development (I-DSD) network; cardiovascular risk in TS; and pubertal induction using either transdermal or oral 17β-estradiol. The Steering Committee of TSWG meets online every two months and is involved in a number of collaborative projects. These include a survey of the availability of estrogen and progesterone preparations countries within and beyond Europe, and the comparison of outcomes with transdermal and oral induction of puberty by encouraging colleagues to enter data on the I-TS platform.
Who are the members of the Steering Group of TSWG?
The current members, in alphabetical order, are: Caroline Brain, UK (2022-), Malcolm Donaldson, UK (2016-), Aneta Gawlik, Poland (2016- ; chair 2023-), Berit Kriström, Sweden (2006-; chair 2013- 2016), Debbie Matthews, UK (2019-), Theo Sas, Netherlands( 2006-; secretary 2016-23); Janielle van der Velden, Netherlands (2016-; Chair 2016-23); Siska Verlinde, Belgium (2006-; Secretary 2023-); and Malgorzata Wasniewska, Italy (2020-). This year, Janielle and Theo stood down as our Chair and Secretary after over six years of invaluable service. We are delighted that they both continue as Steering Group members! We are always looking for new members, and anyone interested is welcome to contact our new secretary Siska Verlinde ([email protected])
What are the aims of TSWG at present and in the near future?
Our main focus is on encouraging and stimulating collaboration. Examples of this include:
- The recent questionnaire devised and distributed by Aneta Gawlik concerning the availability of estrogen and progesterone preparations available for pubertal induction. The results of this questionnaire, with 230 respondents from 35 countries, are being analysed at present.
- Development of the I-TS platform within the I-DSD network. By encouraging colleagues to enter patients onto the I-TS platform we will, as with I-CAH and I-DSD, be able to answer many scientific questions about Turner syndrome. The project on pubertal induction to assess outcomes with transdermal and oral estradiol (see below) is only one example of what could be achieved.
- Mini-puberty: an international prospective, descriptive cohort study aimed at finding markers of ovarian capacity during the mini-puberty of early childhood, in order to predict ovarian reserve in the future.
- Joint projects with the Turner syndrome Special Interest Group from the Pediatric Endocrine Society in America.
ESPE Turner syndrome working group (TSWG) meeting at annual ESPE congress in September 2023,
We are delighted to be part of ESPE again this year at its 61st annual meeting in The Hague, Netherlands, from 21-23 September 2023 and are very much looking forward to meeting you in person! Please find below some information on this year’s working group session in The Hague, and the agenda for our business meeting during which we discuss our various activities and plans for the future/.
Turner syndrome Working Group session
Date: Thursday 21 September
Time: 8:00-9:30 h
Location: Everest 1&2
The main theme for this year’s ESPE TSWG session is titled, “Challenges and opportunities in prenatal and postnatal diagnosis of Turner syndrome. The session starts with a presentation from a mother whose little girl has TS. Then, Debbie Matthews from UK will discuss medical aspects, Dr Rachel Hamblin the psychological aspects, and Martine de Vries from the Netherlands will talk about ethical considerations. These presentations are followed by a panel discussion in which all the speakers are joined by TSWG Chair Aneta Gawlik and a new member of TSWG Steering Committee, Caroline Brain.
After this Malcolm Donaldson from UK will give an update on the I-TS platform. With help from Jillian Bryce and Faisal Ahmed from Glasgow, we are within 6 months of inviting colleagues to enter retrospective data on pubertal induction, with a view to encouraging participation with a prospective project where participants will seek patient and family consent for anonymised data on mode of pubertal induction (oral or transdermal) to be entered and compared.
The session concludes with an update from Janielle Van der Velden on TSWG activities.
Here is the full programme:
| Title | Speaker |
Challenges and opportunities in prenatal and postnatal diagnosis of Turner syndrome Thursday 21 September 2023
(Moderator Prof. Janielle van der Velden, Nijmegen, Netherlands)
| 08h00 | Parent and patient testimony | Mother of 3-year-old daughter with TS (Belgium) |
| 08h10 | Medical aspects | Dr. Debbie Matthews (Newcastle, UK) |
| 08h25 | Psychological aspects | Dr. Rachel Hamblin (Bristol, UK) |
| 08h35 | Ethical considerations | Prof. Martine de Vries (Leiden, Netherlands) |
| 0845 | Interactive Panel discussion | Prof. Aneta Gawlik, Katowice, Poland, Dr. Caroline Brain, London, UK, Patient representative, Dr Rachel Hamblin, Professor Martine de Vries. |
| 0915 | Comparison of transdermal and oral induction of puberty using the I-TS platform – an update | Dr Malcolm Donaldson (Glasgow, UK) |
| 0925 | Update on TSWG activities and Disclosure | Prof Janielle Van der Velden |
Turner WG business meeting
Date: Thursday 21 September 2023
Time: 13:00 – 14:30 h
Location: Central America meeting room
This business meeting 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!
The agenda is included below:
- Introduction
- Evaluation of the ESPE TSWG session in The Hague, 2023; and ideas for the TSWG session in Liverpool, United Kingdom during ESPE 2024
- Update on the Turner guideline meeting in Aarhus, Denmark in 2023 (in collaboration with PES and other groups)
- New ideas for research/project/directions of collaboration between:
- ESPE TSWG and the SIG Turner syndrome of the PES
- Different specialists involved in TS health care (e.g. gynaecology colleagues)
- TSWG and TS family support groups
- An update on the I-TS platform
- Evaluation of the TSWG steering committee: invitation for new members
We hope to see you all at ESPE and at our meetings!
Best Wishes,
The Turner Syndrome Working Group Steering Committee
For further information on the activities of this Working Group please contact the Coordinator Aneta Gawlik at [email protected]
