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Support for Disorders of
Chromosome 22
 
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 CONTACT DISORDERSCONNECTSHOP C22CEVENTSRESEARCHABOUT C22CJOIN C22C


kim

Kim, 22q11 Deletion



caleb

Caleb, age 9
22q11 Deletion Syndrome



allison and andrew

Allison with baby Andrew
Both with 22q11 Deletion


crystal

Crystal, age 2
Cat Eye Syndrome


colin

Colin, 9 months
Emanuel Syndrome


harvey

Harvey
Cat Eye Syndrome


jessica

Jessica, adult
Mosaic Trisomy 22


malori

Malori, 3 years
22q11 Deletion


makily

Makily, age 7
Emanuel Syndrome


payton

Payton, 9 months
22q11 Deletion


vienna

Vienna, 9 years
22q11 Deletion

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.


School of Public Health and Health Systems

University of Waterloo

PARTICIPANTS NEEDED FOR RESEARCH ON THE EXPERIENCES OF COPING DURING COVID-19 PANDEMIC FOR ADULTS LIVING WITH 22q11DS

We are looking for adult (18+) volunteers to take part in a qualitative study that will explore how adults living with 22q11DS experience and adapt to the lifestyle changes from the COVID-19 Pandemic. Parent’s perspectives on how their adult son/daughter is doing is also welcomed. Volunteers from Ontario are especially welcomed but if you are interested from another province or territory in Canada please let us know.

As a participant in this study, you would be asked to participate in an open-ended phone or online interview of approximately 60 minutes (either in one interview, or two shorter interviews of about 30 minutes). The questions will focus on better understanding participants’ experiences with physical distancing, and other measures, during the COVID-19 pandemic.

For more information about this study, or to volunteer as a participant for this study, please contact Professor Sue Horton who will be supported by Research Assistant Jeremy Paulus.

Professor Sue Horton,

School of Public Health and Health Studies

647-525-4976 (mobile) sehorton@uwaterloo.ca

This study has been reviewed by, and received ethics clearance, from a University of Waterloo Research Ethics Committee ORE-45124

 


Posted June 7, 2020


 

G2MH, an international group of scientists and healthcare providers supported by the US National Institutes of Health (NIH), many of whom are members of the 22q11.2 Society and Max Appeal (e.g. Cardiff), is interested in learning about why families and persons affected by any chromosome difference may or may not participate in research studies. In addition, given the current COVID-19 pandemic, G2MH is also hoping to learn about how families are coping during this difficult time.

 

We invite you to complete the following short anonymous survey:

 

https://redcap.chop.edu/surveys/?s=NK7DMDX3CM


Posted May 31, 2020

AWARE research



innovation Research & Training (iRT), a child development research company in Durham, North Carolina, is looking for eight adolescents (aged 13 to 18 years) with 22q11.2 Deletion Syndrome and one parent to participate in a 1-hour joint interview that will take place online using virtual conferencing with a member of our research team. Families can be from anywhere in the U.S.  

 In this joint interview, youth and a parent will be asked to:

  • Review and participate in some online educational program activities

  • Provide feedback on the activities

  • Provide some general ideas, such as stressful or challenging situations that teens may experience.

 Families will receive $50 for participating in the joint interview.

If interested in learning more about participating in the research study, please see our website: http://interview.awareprogramsonline.com OR contact: Liz Reeder, Research Assistant at iRT, 919-493-7700 orlreeder@irtinc.us

Posted Feb. 15, 2019