Why chromosome 6?

See: More information about the project and background – How did this all start?

My child has not only a chromosome 6 abnormality but also an abnormality on another chromosome, can we participate?

Unfortunately patients with more complex chromosomal changes are not able to participate in this chromosome 6 project because we need to be sure the chromosome 6 aberration is the only cause of the problems. If you doubt wether your child can participate you can send us an email or upload the file.

To whom is the information on the new interactive website we are creating available?

The information on this webpage will be available to everyone: parents, patients, doctors and other healthcare providers.

 I do not have a copy of the detailed chromosome analysis, what can I do?

See: What if you do not have a copy of the chromosome analysis?

 How long will it take to complete the questionnaire?

Completing the entire questionnaire will take several hours. It can be done in multiple sessions; the questionnaire can be saved and completed at another time. If it takes you more than a month to complete, we will contact you to find out if you need help.

 After filling in the questionnaire, will I be able to change the information?

Yes, it will be possible to change or update your answers. We also want to send you a yearly invitation to update your answers and to fill in an additional questionnaire.

 What do I need?

You must have email and Internet access to participate. You will need access to your child’s medical history and a copy of the detailed chromosome analysis.

 I do not know the developmental milestones of my child exactly, what can I do?

You can ask your child’s general practitioner or paediatrician. You can also try to reconstruct when your child first smiled/sat/walked by, for example, looking at pictures.

 Will I get paid?

No, participation is strictly voluntary.

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