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!

795 users

398 active participants (+10 answers)

Top 5 Genes

We currently have 542 genes listed on the site.
Numbers in the right column are the number of relatives with at least 10 answers.
KANSL1 (KdV syndrome) 30
EHMT1 (Kleefstra syndrome) 27
ANKRD11 (KBG syndrome) 24
CSB (ERCC6 - Cockayne syndrome) 10
ERCC2 (XPD - CS & TTD) 5

Top 5 Copy Number Variants

We currently have 36 CNVs listed on the site.
Numbers in the right column are the number of relatives with at least 10 answers.
17q21.31 deletion (KdV syndrome) 85
9q34.3 deletion (Kleefstra syndrome) 35
Xq28 dup. (MECP2 dup. syndrome) 21
22q11.2 deletion (DiGeorge syndrome) 6
10p15.1 deletion 2

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
Version Française ci-dessous

Dear KdVS Families,

You’ve been granted access to our latest data analyses of the Koolen-deVries syndrome (KdVS), through the visualisation tab on the GENIDA website (Read more
Genida International Project
A big thanks to all participating families!! The GENIDA project keeps growing, and we hope to see more and more families joining soon!!
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Un grand merci à toutes familles participantes !! Le projet GENIDA continue de grandir, et nous espérons vo...
Read more
Genida International Project
[Version Française ci-dessous]

Families concerned by the Koolen-deVries Syndrome have access to our data analyses since last Thursday. We are very happy that this will be officially announced by David Koolen himself at the 2017 Patient Advocacy S...
Read more
Genida International Project
[Version Française ci-dessous]

The first GenIDA results on specific conditions are coming!

Many of the cohorts* already constituted in the GENIDA project have a dedicated professional of reference (see picture). These are medical geneticists o...
Read more
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...
Read more
Genida International Project
GenIDA will be present (upon invitation) at the Genomic Medicine 2017 Meeting in Brussels, on wednesday nov 15. This is a testimony of the growing interest by professionals and families concerned by genetic forms of Intellectual disability or auti...
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Genida International Project
[Version Française en-dessous]

Dear Families with a child/relative with Kleefstra syndrome. In collaboration with Dr. Tjitske Kleefstra who has a specific access to the results, we are actively processing the data right now. These are the three i...
Read more
Genida International Project
KBG Foundation @KGBFdn shared Genida International Project's photo.

"The first GenIDA results on specific conditions are coming! Note: KBG Syndrome is listed. We are anxious to read this report!"
Read more
Genida International Project
[Version Française ci-dessous]
A printable summary of the questionnaire is now available on the main page of the GenIDA website (English / French). This allows professionals to get a quick overview of the questionnaire without any formal registrat...
Read more
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