The ATR-X Foundation of the Netherlands is conducting a survey to help us learn more about the “natural course of the ATR-X syndrome.” All parents of children with ATR-X, alive or deceased, are asked to complete a questionnaire so we can learn more about every individual with ATR-X. Surveys are asked to be completed by summer 2020.

Here’s a note from the Stichtung ATR-X Syndroom Netherlands:
“Everything is ready to start the international research into “the natural course of the ATR-x Syndrome”. The questionnaires are ready to be completed!

The aim of this research is to get a better picture of the symptoms and the course followed by the ATR-x syndrome. We want to know exactly what the symptoms are, at what age they arise, what other problems arise over the years and what the life expectancy is of people with this syndrome. Specifically, we want to learn more about the gastro-intestinal problems that occur with the ATR-x syndrome and also learn more about the symptoms that resemble epilepsy but where epilepsy cannot be determined.

In addition, we want to identify the psychosocial consequences for parents of children with the ATR-x syndrome, so that parents can be better guided in the care of their child.

The first results will be announced next year at the international ATR-x meeting in the Netherlands, but of course those who participate but cannot come to this meeting will also receive these results!

We also ask parents whose child is deceased to complete the questionnaires. We realise that it is confronting but this information is extremely important to know and to help others in the future. The researchers will handle the data with the upmost discretion.

If you have several children with the ATR-x Syndrome, we would like to ask you to complete the questionnaires separately for each child. We realise that it will take a lot of time, but we have split the questionnaires per subject so that not everything has to be filled in at once. Feel free to fill in everything you think of. We estimate that completing the questionnaires takes approximately 15-20 minutes each. Some may take longer and some will take less time. We would like to ask you to please fill them in within 3 weeks.

If you want to participate in this study, please send an email to info@atrxsyndroom.nl with:
– the name and date of birth of your child in day-month-year (and if applicable also the date of death)
– residence and country
– your consent on letting us save your email address in order to send you the research results and any information about this research in future. Your email address will not be used for any different purposes than that.

This information will be entered and then an email will be automatically sent to you with a code to open the questionnaires online. All data go directly to the researchers and will be anonymised, the ATR-x Foundation in the Netherlands has no access to this data.