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Updated Clinical Practice Recommendations for Managing Children with 22q11.2 Deletion Syndrome (2023)

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This set of clinical practice guidelines focuses on the care of individuals from birth to 18 years of age.  The emphasis is on periodic assessments and family-centered care

Early diagnosis and treatment as well as preventive management are strongly recommended as they optimize health, functioning, and quality of life. Healthcare providers need to have basic knowledge about the variable, multi-system, and changing nature of 22q11.2DS. Specialists from various disciplines need to provide coordinated care and tailor the treatment to suit the child.  Family members and caregivers are an essential part of the care team and benefit from information and support.

Recommendations for Periodic Assessments and Management of Children and Adolescents 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 children with 22q11.2 deletion syndrome.

How to use these forms directly on your computer:

  1. DOWNLOAD this file 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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