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!

945 users

467 active participants (+10 answers)

Top 5 Genes

We currently have 544 genes listed on the site.
Numbers in the right column are the number of relatives with at least 10 answers.
EHMT1 (Kleefstra syndrome) 28
ANKRD11 (KBG syndrome) 25
KANSL1 (KdV syndrome) 13
PTPN11 (Noonan syndrome) 12
CSB (ERCC6 - Cockayne syndrome) 9

Top 5 Genetic Defects

We currently have 49 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) 90
9q34.3 deletion (Kleefstra syndrome) 36
Xq28 dup. (MECP2 dup. syndrome) 23
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

Loading data...
Loading data...
Loading data...
Loading data...

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
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...
Read more
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 ...
Read more
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!!
---
Un grand merci à toutes familles participantes !! Le projet GENIDA continue de grandir, et nous espérons vo...
Read more
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 !...
Read more
Genida International Project
Genida International Project
The GENIDA team wish you all a Happy New Year 2018 and warmly thanks all the families and professionals that supports our effort, Many Thanks! This year will be decisive for the project with now our ultimate goal – concretely improving healthcare ...
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...
Read more
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