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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.


Hello,

My name is Sandra Garza Ochoa, I am a student from the Department of School of Rehabilitation Services and Counseling at the University of Texas Rio Grande Valley (UTRGV). I would like to invite you to participate in my research study. The purpose of this study is to examine the quality of life among caregivers of individuals diagnosed with 22q11.2 deletion syndrome and intellectual disability.

This research study has been reviewed and approved by the Institutional Review Board for the Protection of Human Subjects (IRB) at the University of Texas Rio Grande Valley.

In order to participate you must be 18 years or older and be a caregiver of an individual diagnosed with 22q11.2 deletion syndrome and intellectual disability. If you are not 18 or older or not a caregiver, please do not participate. Participation in this research is completely voluntary, you may choose not to participate without penalty.

As a participant, you will be asked to complete an online survey which should take about 15 minutes to complete. All data will be treated as confidential and stored on a secure server. However, given that the surveys can be completed from any computer (e.g., personal, work, school), there is no guarantee of the security of the computer on which you choose to enter your responses. As a participant in this study, please be aware that certain technologies exist that can be used to monitor or record data and/or websites that are visited.

If you would like to participate in this research study, please click on the survey link below and read the consent page carefully. If you would like to complete the survey, click on “I agree”. If not, simply exit the web browser or click on “I do not want to participate”.

A raffle of 10 Visa Gift Cards for $25 each will be offered to those who participate in this research study.

Survey Link: https://utrgv.co1.qualtrics.com/jfe/form/SV_eQCxmmIY7Le80rc

If you have questions related to the research, please contact me by telephone at 956-975-9109 or by email at Sandra.Garza15@utrgv.edu.

Thank you for your cooperation!


Sandra Garza Ochoa, MA
Doctoral Candidate, LPC

Posted July 27, 2022


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