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.
To learn more, please email: NerdLab@childrens.harvard.edu
Posted December 29, 2022
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
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