Important: Questionnaires are translated in English, French, Dutch, German and Portuguese. The rest of the website interface is in English and French only.

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

Questionnaire


Join us now!

1050 users

519 active participants (+10 answers)

Top 5 Genes

We currently have 546 genes listed on the site.
Numbers in the right column are the number of relatives with at least 10 answers.
EHMT1 (Kleefstra syndrome) 32
ANKRD11 (KBG syndrome) 25
KANSL1 (KdV syndrome) 22
PTPN11 (Noonan syndrome) 14
MED13L 12

Top 5 Genetic Defects

We currently have 52 genetic defects listed on the site.
Numbers in the right column are the number of relatives with at least 10 answers.
17q21.31 deletion (KdV syndrome) 98
9q34.3 deletion (Kleefstra syndrome) 39
Xq28 dup. (MECP2 dup. syndrome) 26
VALDEV project (non-genetic) 17
22q11.2 deletion (DiGeorge syndrome) 15

Participants' countries of origin

(This chart only takes in account relatives for which we have at least 10 answers)

Cohorts Overview

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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
If we filled out the initial questionnaire, should we log back in and periodically to update the information?
Genida International Project
Thanks to a small and active french patients association (and the help of Dr Thomas Smol in Lille) , the MED13L syndrome has entered the list of the 5 top genes in GenIDA, with 10 parents having filled the questionnaire on behalf of an affected ch...
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Genida International Project
GenIDA team reinforced by an expert in pharmacovigilance: strong motivation of GenIDA participants in providing additional information.

One important goal of GenIDA is to evaluate, for specific genetic forms of intellectual disability or autism, ...
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Genida International Project
Notre dernier flyer à trois volets : il arrivera d'ici peu dans de nombreux Services de Génétique, partout en France. Prochaine étape : les associations ! L'objectif, se faire connaitre et recruter au plus large à l'échelle Française !...
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Genida International Project
Genida International Project
GenIDA has reached its first target (1000 registered participants) and convened the 3rd meeting of its Advisory board, last week in Milano.

The 1000 registration target was reached on june 15, just 2 days before the GenIDA meeting in Milano. The ...
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Genida International Project
GenIDA is on target.... sur la cible
who will be the winner?
qui sera le gagnant?

GenIDA is approaching the target of 1000 registered participants, and even more important, the target of 500 active participants, those who have filled more than 10...
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Genida International Project
Our last flyer, translated from French by very nice and collaborative members of the UK Noonan syndrome association (NSA)! Thx!! Please feel free to request the high quality pdf version of it, if needed (genida@u...
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Genida International Project
Genida International Project
GenIDA is an international Project. They collect information on MED13L. I highly recommand each MED13L family to fill in the questionnaire (available in several languages). genIDA needs datas to feed its database, as there is very few information ...
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