To date, very little information is available in the scientific literature on women’s health and pregnancies in patients with hepatic glycogen storage diseases.
We are therefore inviting you to participate in a large international, multicentre questionnaire on this topic.
The study is led by the metabolic team at the University Children’s Hospital Freiburg, Germany (Prof. Dr. Sarah Grünert, metabolic consultant). It is carried out in cooperation with MetabERN, the European Reference Network for Hereditary Metabolic Disorders, and many metabolic centres that care for patients with hepatic glycogen storage diseases worldwide. The project is also endorsed by many national patient organizations, and patient representatives have been involved from the beginning. The study was approved by the ethics committee of the University Hospital Freiburg, Germany.
What are we inviting you to participate in? A web-based questionnaire topics covering topics related to women’s health including contraception, fertility, pregnancy, delivery, and breastfeeding.
Who are we inviting to complete this questionnaire? Any woman with a hepatic glycogen storage disorder (GSD 1a, GSD 1b, GSD IIIa, GSD IIIb, GSD 0, GSD IV(4), GSD VI(6) and GSD IX(9), or Fanconi-Bickel Syndrome), aged 16 years and older.
How long does the questionnaire take to complete? About 10 minutes
Will my name or other personal identifying information be collected? NO – Participation is voluntary and completely anonymous. We do not collect your name, your e-mail address, or any other information that could identify you.
Where are the answers to the questionnaires stored? Answers are collected via REDCap(a secure web application), and the data is stored on a server at the University Medical Center Freiburg to ensure maximum data security. Only the study leadership team has access to the data. All questionnaire data will be deleted 10 years after the termination of the study.
What will we do with the information collected? We plan to publish a summary of the answers in a scientific journal and to present the results at scientific conferences and at patient meetings.
We hope that your answers may help us to identify needs, and improve counselling and care for women with hepatic glycogen storage diseases in the future.
We would be delighted if as many women as possible, aged 16 years and older, could take part – please click on the link below or scan the QR code.
Link to the questionnaire (available in 12 languages):
https://zks-redcap.uniklinik-freiburg.de/surveys/?s=EJELDKYKC7NLKF4Y
QR code link to the questionnaire:
Sarah Grünert & Karina Zeyer
Children’s Hospital, Department of Pediatrics, Adolescent Medicine and Neonatology,
Freiburg University Hospital, Freiburg, Germany