Aims

The aims of the Working Group on Turner Syndrome are to:

  • Promote knowledge and awareness leading to early diagnosis and optimal prevention and treatment of comorbidities over the lifespan.
  • Promote research activities in young people with 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.

Sessions and meetings

Working group composition

Coordinator
  • Aneta Gawlik

    Katowice, Poland

Members
  • Berit Kristom

    , Country

  • Caroline Brain

    London, United Kingdom

  • Debbie Mathews

    , Country

  • Malgorzata Wasniewska

    Messina, Italy

  • Saskia Verlinde

    , Country

History

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 organizes 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.

We were really sad to have lost our Friend, Spiritus Movens of our activity, the energetic and valuable Dr Malcolm Donaldson in September 2024.

Future developments

Our main focus is on encouraging and stimulating collaboration. Examples of this include:

  • The recent questionnaire devised and distributed by Aneta Gawlik-Starzyk concerning the availability of estrogen and progesterone preparations available for pubertal induction. The results of this questionnaire, with 230 respondents from 35 countries, was presented at the ESPE meeting and published.
  • 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 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. The results have been analyzed and the manuscript is now being prepared for publication.
  • Joint projects with the Turner syndrome Special Interest Group from the Pediatric Endocrine Society in America.

Contact

We are always looking for new members, and anyone interested is welcome to contact our secretary Siska Verlinde (siska.verlinde@compaqnet.be).

For further information on the activities of this working group please contact the coordinator Aneta Gawlik-Starzyk (agawlik@mp.pl).