The following announcements are being provided to you as a courtesy by the International 22q11.2 Foundation. Unless otherwise noted, the research is not being conducted by or funded by the Foundation. The announcements and the parties conducting and sponsoring the research meet basic guidelines established by the Foundation regarding relevancy and appropriateness to 22q11.2 deletion and/or duplication syndromes. The Foundation takes no position and makes no claims as to the potential benefits of the studies, including those studies involving medications, and cannot be responsible for any outcomes, lack of outcomes or unintended side effects. If interested in learning more about, or participating in, any research study, we urge you to use the contact information listed on the institution’s flyer or website. Please note that there will often be other research studies on 22q11.2 deletion syndrome that are available to you locally or regionally that may not be advertised here.
If you are a conducting pertinent research project and you do not see it listed here, please email email@example.com with the complete details, aim of the study and a copy of the IRB approval letter. We will have the study reviewed by our medical advisors and gladly post here if it meets appropriate criteria.
Research Study at Trinity College in Dublin Ireland
(posted May 6, 2021)
You are being invited to take part in a research study that is being done in Trinity College Dublin’s Applied Psychology Masters program by Madeline Regan. This small-but-mighty research team is looking to capture the family experience of 22q11.2 as it relates to health, education and social support. What works, what doesn’t, and what you wish you knew going into your 22q11.2 journey.
Could you spare 15 minutes of your time to complete the online survey below? — > https://forms.office.com/r/y8h3gWWrHG
The results of this study will help create a ‘necessary supports’ leaflet for 22q11 families to use as a framework for healthcare and education providers. In addition to these resources, we plan to facilitate a webinar to relay the results of this survey to continue the 22q11 conversation.
For any questions or concerns about the survey, please email Madeline at firstname.lastname@example.org or read the information leaflet here.
An updated list of Clinical Trials can be found at the National Institutes of Health. Click here to find more information.