The University of Newcastle, Australia, seeking participants have a sibling with 22q11.2 deletion syndrome /VCFS who are aged 12 years or older to participate in the study. You must live in the Sydney or Hunter regions of NSW. Click for full information.
Posted July 19, 2015
The Stress Cognition and Affective Neuroscience Laboratory (SCAN Lab) at the University of New Orleans, in Louisiana, is currently seeking a Military family with a child between the ages of 1 and 2, with 22q11.2 Deletion Syndrome, in order to conduct a longitudinal case study, with the potential to help inform the general population with regards the early stages of the syndrome, and development, as neurological, behavioral and the cognitive critical period is in its prime action.
Compensation for time and dedication is being considered and will depend on Grant funding, however a pre-screening is done online and donation of the family time is highly appreciated. Potential participants are welcome to e-mail me @ email@example.com or to contact me through phone @ (504) 275-7489, phone calls and text messages are more than welcomed! Tatiana Sofia BegaultIn Addition the SCAN Lab currently seeks Louisiana children from the ages of 8 to 14 years old, with 22q.11.2DS to participate in current research. We provide every assistance possible in order to have your collaboration. Feel free to contact us through our web site: http://labs.uno.edu/scanlab/
ATTENTION FATHERS!!!! WE NEED YOU
Are you a father of a child with 22q11.2 Deletion syndrome? The
University of Newcastle is interested in your experiences of
well-being, coping styles, and access to support, as well as
your level of growth since your child’s diagnosis. If you want
more information, or would like to complete the questionnaire,
please follow this link http://www.findlab.net.au/
Posted June 7, 2015
Stanford University School of Medicine is seeking participants with the 22q11 deletion for a stem cell model study - and who are between the ages of 18-40. Download FLYER HERE for more info.
Posted May 2015
UCLA Center for Autism Research and Treatment: Cognitive function and Brain Structure Research Study for children with 22q11.2 Duplication - Click here for flyer.
UCLA Center for Autism Research and Treatment: Brain Struction and Function in Genetic Disorders - for those ages 18 and over with 22q11.2 deletion syndrome. Click here for flyer.
Posted September 4, 2014
22q11.2 Deletion Syndrome (Velocardiofacial Syndrome), Cognitive Function and Brain Structure Research Study
THE PURPOSE OF THE STUDY
This current research study, conducted jointly by investigators, Carrie Bearden, Ph.D., Departments of Psychiatry and Biobehavioral Sciences and Psychology, Katrina Dipple, M.D., Ph.D., Departments of Human Genetics and Pediatrics, and Christina Palmer, Ph.D., Department of Psychiatry and Biobehavioral Sciences, aims to examine emotional adjustment, thought processes such as memory and attention, and brain structure and
activity in children and adolescents with 22qDS, as compared to children and adolescents without the disorder. The study also aims to determine whether variation in the specific genes affected by 22qDS is related to differences in brain structure, function and behavior. By repeating the assessments at two follow-up visits (1 and 2 years later) we will be able to determine how brain structure and function changes over time in individuals with 22qDS.
WHAT WILL PARTICIPATION INCLUDE?
Baseline participation may take between one to two days (~7 hours for all study procedures). Participants will be given paper and pencil and computer tests of memory, attention and logic, and interviews about their mood, thoughts and behaviors by a trained staff member at the UCLA Center for Cognitive Neuroscience, and an MRI scan at UCLA’S Brain Research Institute. These tests will help us to learn more about how the brain works in people with 22qDS. The study also involves a review of medical records, to get information about birth and medical history, and an optional blood or saliva sample obtained from both you and your child, to determine whether thegenes affected by 22qDS may be related to differences in how the brain works. Some of the study procedures will be repeated at 2 follow-up timepoints. All procedures will be explained carefully and all participation is completely VOLUNTARY. You maywithdraw from the study at any time. There is no financial obligation on the part of the participant.Participants will be compensated up to $260 for full participation in all of the study visits. If after the initial evaluation it is determined that you are not eligible for the study you will be compensated $20 for your time. There are minimal risks involved with participating in this study.
WHO MAY BE ELIGIBLE TO PARTICIPATE?
1. Your child is between the ages of 6-30
2. Your child has a confirmed diagnosis of 22q11.2 deletion, via FISH test
3. Your child has not been diagnosed with a disorder of the brain or nervous system (such as epilepsy, encephalitis, brain tumor, etc.)
4. Your child does not use drugs or abuse alcohol
5. Your child is able to complete the study measures and interviews in English.
:If you are interested in finding out more about this research study, Please call Carolyn Chow at (310) 825-3458 or email firstname.lastname@example.org
*Individuals under 18 must have their parents call.
Principal Investigator: Carrie Bearden, Ph.D.Email: email@example.com
Department: UCLA Semel Institute, Depts of Psychiatry and Psychology, and Brain Research Institute.Please be assured all inquiries are kept confidential.
The Centre for Genomics and Policy at McGill University is looking for participants for a study on the experiences and preferences of patients with rare diseases and also of parents of children with rare diseases, in the Toronto and Ottawa Areas.
Please see flyers for
Posted May 6, 2014