Why Chromosome 6?
My child not only has a chromosome 6 aberration but also an aberration of another chromosome, can we participate?
Unfortunately, patients with more complex chromosomal changes are not able to participate in this Chromosome 6 Project. We want to study the effect of chromosome 6 aberrations on the health and developmental abilities of children. However, if a child also has significant aberrations in other chromosomes we cannot discriminate between the effects caused by the different aberrations. So if a child has a combination of different chromosome disorders, his or her clinical information does not contribute to our understanding of how the chromosome 6 changes affect their development. If you have any doubt about whether your child should participate, please send us an email or upload their array report file.
What do I need to participate?
You must have an email address and internet access to participate in the Chromosome 6 Project. You will also need access to your child’s medical history and either have or can request a copy of the detailed chromosome analysis (array report) from your child’s doctor.
I do not have a copy of the detailed chromosome analysis (array report), what can I do?
You can request the detailed chromosome analysis (array report) from your child’s doctor or geneticist. You can use this template letter to make the request.
How do I sign up for the Chromosome 6 Research Project?
You can sign up for the Chromosome 6 Research Project via our website if you already have the array report (see FAQ above). Click here to sign up. After signing up, we will check if we can include your child in the study and then you will receive a login to a personal account. We always try to respond to sign-ups within one week.
In which languages is the Chromosome 6 questionnaire available?
The online Chromosome 6 questionnaire is currently available in seven languages: English, Nederlands, Deutsch, Français, Español, Português and Italiano. The questionnaire has been translated by native speakers.
Where can I find the questionnaire?
You can only access the questionnaire after you have received a login to a personal account. The link to the Chromosome 6 questionnaire is given in the email with your account information, but can also be found here.
What should I do if I forgot my password?
If you forgot your password, please email us firstname.lastname@example.org
We will reset your password manually. We hope this will be possible automatically via the questionnaire website in the near future.
How long will it take to complete the questionnaire?
Completing the entire questionnaire will take you several hours, but this can be done in several sessions. You can save the questionnaire at any time and go on to complete it later. If the questionnaire has not been completed within one month after you started to fill it out, we will contact you to ask whether you need any help.
After filling out the questionnaire, will I be able to change the information?
After submitting the questionnaire, it is not possible to change your answers. However, from 2018 onwards, we will send you an invitation every year to update your answers and to fill out a follow-up questionnaire. We will send this invitation to you until you notify us that you no longer want to receive them.
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 for information. You can also try to reconstruct when your child first smiled/sat up/walked by looking at photographs or videos, for example.
How will I learn about the results of the study?
We report our findings in lay summaries for parents to the international Chromosome 6 Facebook group. These short news items are also accessible on our website at www.chromosome6.org/news. We also update our followers on Twitter: @C6study.
We further use the information from our findings to update leaflets, for example, the chromosome 6 disorder leaflets published by Unique.
We expect to publish several papers in professional medical journals by the end of 2017. Your doctor will have access to these papers and we will also publish summaries (abstracts) on this website.
Will I get paid?
No, participation is on a strictly voluntary basis. Read more in our privacy statement.
How is the Chromosome 6 Research Project funded?
The Chromosome 6 Research Project is mainly funded by crowd-funding organised by parents. That’s the real meaning of: Driven by parents, for parents.
How can I support the Chromosome 6 Research Project?
You can support the Chromosome 6 Project by creating awareness about the project and by donating to our fund. Donation options can be found on this page. If you want to start fundraising yourself, you can use our fundraising leaflet.
If you cannot find your answer here:
Please send an email to email@example.com
We will try to answer your questions within one week. If English is not your native language, please feel free to write to us in your own language. We will try to tackle language barriers with the help of Google translate or via one of the international medical students who have volunteered to help us.