GenIDA: Genetically determined
Intellectual Disabilities and Autism Spectrum Disorders

A website for Patients, Families and Professionals

You can register on GenIDA if:


  • ✔ One of your child, brothers, sisters or close relatives has manifestations of intellectual disabilities (ID) and / or autism spectrum disorders (ASD).

  • ✔ She/he has been diagnosed as carrier of a genetic mutation affecting a single gene or a small chromosomal segment and it has been concluded by a specialist that this mutation is responsible of the ID or ASD.
  • ✔ You are interested in providing and updating health information that will be kept anonymous and that will help gaining better knowledge on the genetic condition that affects you child, sister, brother or relative.

Flyer for parents

Flyer for professionals


Join us now!

620 users

302 active participants

Participants' countries of origin

(This chart only takes in account relatives for which we have at least one answer)

Collaborators


  • David A. Koolen
  • Tjitske Kleefstra
  • Kim P.J. Schellekens

Department of Human Genetics, Radboud University Medical Centre, Nijmegen, The Netherlands

  • Bert B.A. de Vries
  • Edward Vernhout

Human Diseases Genes website series

Latest news - Follow us on Facebook


Genida International Project
[Version Française ci-dessous]

After very busy months, we are back with great news! Our data analyses are finally going to be accessible for participating families, starting with families concerned by the Koolen-deVries syndrome, the Kleefstra sy...
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Genida International Project
Le projet GenIDA présenté à un grand congrès de Génétique médicale aux États-Unis.

Une affiche (poster) montrant les objectifs et le statut actuel du projet GenIDA a été présentée par Jean-Louis Mandel lors de du congrès annuel de l'Amercan ...
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Genida International Project
[Version Française en-dessous]

Dear Families with a child/relative with Kleefstra syndrome (mutations in the EHMT1 gene or deletions affecting the 9q34 region of chromosome 9)*

The Kleefstra group on GenIDA has been growing since last December ...
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Genida International Project
[Version Française en dessous]

Following the previous post, here are the results concerning the questionnaire length and intelligibility. The main information here is that the questionnaire is often considered “too long”. Some parents, notably wi...
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Genida International Project
[Version Française en dessous]

After a rather quiet January month, we are back on Facebook! The coming months will be rich in updates and improvements. Although we are still working on the full implementation of the visualization system that will...
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Genida International Project
The 2nd meeting of GenIDA's international scientific and ethics advisory committee will take place on may 28 in Copenhagen, on the occasion of the large meeting of the European Society of Human Genetics (ESHG). Read more
Genida International Project
GenIDA present at a major meeting in the US.

A poster showing the purpose and current status of the GenIDA project was presented by Jean-Louis Mandel at the annual meeting of the American College of Medical Genetics (ACMG), in Phoenix (Arizona)....
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Genida International Project
[Version Française en dessous]

And last but not least, data Security and Use (see the two previous posts for the others evaluations). Most GenIDA users are clearly not worrying about how we manage data security and about the potential use of thei...
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Genida International Project
[Version Française en dessous]

We have recently asked the GenIDA members to answer some questions about the website, the questionnaire and the security/data. Here are the results concerning the website and it’s clear: we need to improve it and ma...
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Genida International Project
[Version Française ci-dessous]

To improve the GenIDA website and its questionnaire, some questions were sent by mail to all our “family-members”. Please, don’t hesitate to check your mails and give us your opinion! It matters!
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Afin d’améliore...
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