EU SURVEY STUDY: INVITATION FOR PARTICIPATION OF FAMILIES OF SBH ASSOCIATIONS

Background

There is a unique opportunity for the spina bifida and hydrocephalus associations to have a direct influence to improve the European Association of Urology Paediatric Urology Guidelines for care for children with urological problems.

This survey study is part of a broader collaboration between the International Federation for Spina Bifida and Hydrocephalus (IF) together with the European Association of Urology (EAU), ERN eUROGEN, and the ERN ITHACA.

It is a unique collaboration whereby we actively involve persons with spina bifida and/or hydrocephalus and their families to improve the existing guidelines in making them more patient centred. In this way, the spina bifida and hydrocephalus community is actively involved in the development of this survey study from the beginning onwards.

The International Federation for Spina Bifida and Hydrocephalus distributes this survey internationally for only a limited number of countries.

Your cooperation to complete this survey (which takes 15 minutes) is of great value! With your contribution, we are able to obtain a better understanding on the needs for urological care and specific differences between countries. The results will be used to improve the current European Association of Urology Paediatric Urology Guidelines.

Survey

Children and adolescents until the age of 18 years old and their families are invited to complete the survey. The results of the survey are collected online and will be handled anonymous. The first round of the survey will finish September 30^th 2023.

Following the results, IF will invite her member associations to take part in a members meeting for discussion of the results and outcomes. Furthermore, the results will be published in a peer reviewed scientific journal and presented during the upcoming IF 30^th International Conference on Spina Bifida and Hydrocephalus.

Please find the invitation letter for this survey study HERE.

Surveys are available in 11 languages:
English: https://www.surveymonkey.com/r/7WSB9S9
Greek: https://www.surveymonkey.com/r/5TDFNQQ
French: https://www.surveymonkey.com/r/5TJR5PH
Turkish: https://www.surveymonkey.com/r/5TWWNXT
Spanish: https://www.surveymonkey.com/r/JGXLRYC
Italian: https://www.surveymonkey.com/r/JGNRG2P
Danish: https://www.surveymonkey.com/r/5TT58N9
German: https://www.surveymonkey.com/r/JGB9XT6
Dutch: https://www.surveymonkey.com/r/5ML5SVV
Bulgarian: https://www.surveymonkey.com/r/QZG6G76 
Portuguese: coming soon

For any questions regarding the survey, please send an email to [email protected]