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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.


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