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22q11 Deletion Syndrome Clinic
- Location:
- 525 University Ave, Suite 940, 9th Floor, Toronto, ON
- Phone:
- 416-813-6390
- Fax:
- 416-813-5345
About the Clinic
The 22q11 Deletion syndrome (22q11DS) clinic at SickKids was established in 2003 within the Division of Clinical & Metabolic Genetics. Our goal is to provide and promote coordinated, interdisciplinary care and support to children with 22q11DS and their families. Children with 22q11DS can present with a variety of health and developmental symptoms that can involve their heart, immune function, endocrine function, speech, learning, and behavior in addition to other medical issues. Each child with 22q11DS will have a unique set of needs. Our clinic provides our patients access to an interdisciplinary team of specialists from across SickKids with expertise in 22q11DS.
The 22q Deletion Syndrome Clinic welcomes donations to support its programs such as funding for translational research projects and community educational initiatives. Upon completing the payment details, you will have an opportunity to select an area of designation; please indicate that your donation is directed to the “22q Deletion Syndrome-Genetics". Alternatively, contact the SickKids Foundation Donor Care Team for assistance.
Who we are
We are a team of health care providers from across SickKids with special interest and expertise in 22q11DS. Our team includes professionals from Genetics, Cardiology, Immunology, Endocrinology, Speech and Language Pathology, Otolaryngology (ENT), Psychiatry, Plastic Surgery, and Orthopaedics. We collaborate to develop best practices in caring for children and adolescents with 22q11DS.
What we do
Patients referred to our clinic are seen by the core genetics team (a genetic counsellor and pediatric genetics physician) for an initial comprehensive assessment. The care plan is tailored to each individual’s unique needs and referrals to appropriate specialists are made as needed. Patients are seen at designated intervals from the time of diagnosis to 18 years of age. Our team provides support, education, and guidance to families regarding 22q11DS-related issues. When the time comes for a patient to transition to adult care, we offer a formal transition program in partnership with the Dalglish Family 22q Clinic at the University Health Network (a clinic for adults with 22q11DS).
To be internationally and nationally recognized as a center of excellence for clinical care, research, and community education with respect to the 22q11 deletion syndrome paediatric population.
- To provide coordinated, timely access to health care and community services for children with 22q11 deletion syndrome.
- To establish evidence-based clinical care guidelines for children with 22q11 deletion syndrome.
- To educate community health care providers about the needs and issues of the 22q11 deletion syndrome population.
- To identify adequate resources for individuals with 22q11 deletion syndrome transitioning to adulthood
- To initiate and participate in clinical and laboratory research initiatives that will further our understanding and drive evidence-based medical follow-up interventions for this group of patients.
Interested in connecting with other families with 22q11DS?
The 22q11DS Clinic operates a family directory for individuals with 22q11DS and their families. 22q11DS Family Network members will receive updates from the Clinic, information about 22q11DS-related resources and have an opportunity to network with each other.
Patient & family resources
AboutKidsHealth
22q11DS
Learn what causes 22q11DS, how it's diagnosed and how it's treated.
Genetics
Learn about the genetic causes of 22q11DS, risk factors and confirming diagnosis.
Medical features
Learn about common medical features of 22q11DS.
Bone health
Find out how calcium and vitamin D help build strong bones.
Meet the team
Cardiologist
Endocrinologist
Genetic Counsellor and Clinic Coordinator
Genetic Counsellor and Clinic Coordinator
Immunologist/Allergist
Orthopaedic Surgeon
Otolaryngologist
Paediatrician
Plastic Surgeon
Psychiatrist
Speech Language Pathologist
Referring a patient
Any child or adolescent with a confirmed diagnosis of 22q DS may be referred to our clinic. All referrals must be made by a physician or nurse practitioner and include documentation of the 22q11DS diagnosis as well as all relevant health records. Please note, we do not accept referrals for patients with a suspected diagnosis.
Clinical questions
Andrea Shugar, Clinic Coordinator
Administrative questions
Rozmin Visram, Clinic Administrator
Mailing address
22q Deletion Syndrome Clinic
Division of Clinical and Metabolic Genetics
555 University Ave
Toronto, ON, M5G 1X8