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Chromosome 22 Central
Support for Disorders of
Chromosome 22

 
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Research

We are happy to help spread the word about studies that are of interest to C22C community members. Email Stephanie if you would like to post a study on this page.


emory 22q11 study

We are currently recruiting people ages 16-60 with a 22q deletion to participate in two days of research in Atlanta, GA. The goal of the study is to better understand how the genetics of 22q relate to brain activity and symptoms of psychosis. This is an observational study, so we ask people to complete various tasks and we draw blood samples, but we do not provide any medical treatment. We do provide compensation for each day of participation as well as lodging and mileage reimbursement for eligible regional participants.

Posted May 24, 2022


The GenIDA project

genida logo

The GenIDA project is an international participatory research project on forms of intellectual disability, autism and epilepsy of genetic origin, initiated in 2016 by Prof. Mandel of the University of Strasbourg.

This project aims to collect longitudinal health information from the families concerned who answer a questionnaire on the different manifestations (medical, behavioral, etc.) of the disease in the affected person and on its natural history (evolution at different ages).

As soon as a sufficient number of participants sharing the same genetic disease and having answered the questionnaire, the results of the anonymous analyses are made available to physicians, researchers and other professionals involved in the management of this disease. The results will also be made available in summary form to relevant associations and Facebook groups, as well as to the families who responded to the questionnaire.

The more families that participate, the more information of medical interest will emerge, allowing for better care of people with the disease.

Best regards,

The GenIDA team: Pr Jean-Louis MANDEL and Dr Pauline BURGER

Tel: +33 (0)3 88 65 56 25

Mail: genida@igbmc.fr ; burgerp@igbmc.fr

Website: https://genida.unistra.fr 

Facebook + messenger : www.facebook.com/GenIDAproject/

YouTube channel Genida Project : https://www.youtube.com/channel/UCHR_4upMiE33Q4tcxp6kJ_Q

Posted June 5, 2022