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Updated Clinical Practice Recommendations For Managing Adults with 22q11.2 Deletion Syndrome

This set of clinical practice guidelines are developed for the care of individuals 18 years and older, covering life from the transition into adulthood all the way to the elderly age range. The emphasis is on periodic assessments to uncover and manage conditions that are later-onset or previously undetected. 

Early diagnosis and treatment are important, and standard treatment strategies apply for each condition.. Healthcare providers from different specialties need to provide coordinated care and tailor the management to suit the individual, taking into account coexisting issues, intellectual disabilities, learning disabilities, mental health problems, and the changing nature of 22q11.2DS over time.  In many cases, family members and caregivers continue to be an essential part of the care team.

Recommendations for Periodic Assessments and Management of Adults with 22q11.2 Deletion Syndrome

From time to time, it is important to have health checks, as these may reveal conditions that need attention. Here are the recommended checks for adults with 22q11.2 deletion syndrome.

How to use these forms directly on your computer:

  1. DOWNLOAD these files onto your hard drive or your cloud first before entering check marks digitally, or else your check marks will not be saved.
  2. Open these files from your system viewer (i.e. Finder on Macs or File Explorer on Windows), not a web browser
  3. These files are fillable and savable PDFs, so you can type directly into the forms and save your responses.

If you are still unable to enter check marks or save your responses, please consider updating your Adobe Reader.   Alternatively, you can print the forms and fill them out on paper.

**This information is brought to you by the Foundation for educational purposes only. It is not intended to be taken as medical advice. If you have any concerns please talk to your healthcare provider.

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