22q primary page image

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 info@22q.org 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 to include individuals with 22q11.2 deletion and duplication

(posted October 21, 2023)

The purpose of this study is to investigate how the brain develops in children, adolescents, and young adults with chromosome 22q11.2 differences. The study may be completed virtually or in person. Please take note this study is only being conducted in the US.

For more information please contact:

Sean Gallagher: gallagher3@chop.edu or (215) 906-5071

Emily McClellan: mcclellane@chop.edu or (267) 592-1290

For more information please view attached flyer.

The Neuroscience of Risk and Development Lab at Boston Children’s Hospital

(posted December 12, 2022)

The Neuroscience of Risk and Development Lab at Boston Children’s Hospital is currently recruiting individuals between the ages of 9 and 26, with access to a smartphone, and who have been diagnosed with 22q11.2 Microdeletion Syndrome for a digital phenotyping study.

Eligible participants will be asked to complete the following:

  1. Digital activity tracking using a smartphone app 
  2. Interviews
  3. Computer tasks

The study involves two weeks of digital activity tracking and one virtual or in-person visit. Total participation time is 3-4 hours. Legal guardians must be present for consent. 

Research participants are compensated. 

To learn more, please email: NerdLab@childrens.harvard.edu  also you can also read more in attached flyer.

Research Study in US and Canada

(updated October 27, 2022)

Nobias Therapeutics is currently recruiting patients for a clinical research trial of a new investigational medication for children and adolescents who have 22q11.2 deletion syndrome plus inattention, anxiety, or difficulty with social interactions. You can read more about the clinical trial in the study brochure for families or in the study profile at ClinicalTrials.gov.

Clinical Trials

An updated list of Clinical Trials can be found at the National Institutes of Health. Click here to find more information.

Donate Today

At the International 22q11.2 Foundation we help families that need important resources and information to meet the needs of loved ones with 22q.