About the Society

ESPE Working Groups

ESPE Turner Syndrome Study Group

Background

TS girls constitute a group with multi-facet problems leading to increased nosology and mortality; growth retardation, cardiovascular disorders, osteoporosis, infertility and psychosocial problems. Can the pediatrician prevent or ameliorate these complications?

Aims

To advance research, develop a comprehensive database, and promote knowledge and education, in order to optimize a holistic care of individuals with TS.

Names of proponents

Coordinator:
Catherine. Dacou-Voutetakis - Greece

Other proponents:
Attila Buyukgebitz - Turkey
Alexander Kurtev - Bulgaria
Berit Kristrom - Sweden
Ewa Tendera - Poland
Jean-Claude Carel - France
Lucia Ghizzoni - Italy
Nehama Zuckerman-Levin - Israel
Ze'ev Hochberg - Israel
Ensio Norjavaara - Sweden
Sabine M.P.F. de Muinck Keizer-Schrama - The Netherlands

Planned activities for the next 2 to 3 years

To achieve our goals the following steps are proposed:

  • To develop a comprehensive database of patients with TS for more precise definition and timing of the problems involved. Based on these results, to formulate guidelines for more appropriate and earlier intervention aiming to prevent or ameliorate complications. Study group members will participate in collecting data on long term follow-up in their countries, following a specific protocol.
  • Support the writing of pertinent leaflets for patients and their families in countries in which such information is missing.
  • To collaborate with Adult Endocrinologists and Pediatric Gynecologists.
  • To organize symposia, possibly on the day before the formal opening of the ESPE annual meeting in coordination with the POC.
Intervention studies

The following ideas have been entertained:

  1. Trials with very small doses of estrogens in the prepubertal stage.
  2. Early Calcium and Vitamin D supplementation for possible prevention of osteoporosis.
  3. Life style modifications and psychosocial support especially in adolescents.
Meetings

Meetings will be held annually. The annual meetings will be held during, before or after the ESPE annual meetings.

Contact for further information

Catherine Dacou-Voutetakis
Professor of Pediatric Endocrinology
First  Department of Pediatrics
Athens University School of Medicine
"Aghia Sophia" Children's Hospital
Athens 11527, Greece
E-mail: adacou@med.uoa.gr
tel: +30210-7467474
fax: +30210-7796312