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.
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
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