(www.cheo.on.ca)

Children’s Hospital of Eastern Ontario (CHEO) Rett Syndrome Clinic – Ottawa, Ontario

Permanently Closed as of January 1, 2023

A message from CHEO:

The Dr. Peter Humphreys Rett Syndrome Clinic at CHEO ran from 2006 until the end of 2022. 

CHEO is extremely grateful for the funding support from ORSA which made the clinic possible. The clinic was headed by Dr. Humphreys from 2006 until his retirement in 2017. Drs. Melissa Carter (geneticist) and Erick Sell (neurologist) ran the clinic from 2017-2022. Renee Brannan was the Nurse Coordinator since the clinic’s inception until it closed. The clinic followed over 75 individuals with Rett syndrome, CDKL5 deficiency disorder, and FOXG1 syndrome during its 13 years of service. 

While the clinic itself is no longer in operation, consultations may be requested with Dr. Carter or Dr. Sell, for patients within the province of Ontario and eastern Quebec. Virtual appointments are possible.

For Rett-related issues requiring a neurologist’s input (eg seizure management), referrals can be made by a physician or nurse practitioner to Dr. Erick Sell in the Neurology clinic at CHEO. This is a pediatric clinic, so patients must be under 18 years of age. See this website for information on how to refer.

For Rett-related diagnostic questions, or for those newly diagnosed, referrals can be made by a physician or nurse practitioner to Dr. Melissa Carter in the Genetics clinic at CHEO. This clinic accepts patients of all ages. See this website for information on how to refer.

Clinic Services Prior to January 1, 2023

The Rett Syndrome Clinic provides diagnostic expertise and clinical care to children, youth and adults*, as well as to their families.

In addition to evaluating the possibility of a diagnosis of Rett syndrome, we provide medical management of neurological issues in patients with typical and atypical Rett syndrome (i.e., seizures, contractures, sleep disorders, dystonia).

The clinic is a teaching venue for students and resident physicians.  It is also a focus for clinical research in Rett syndrome (e.g. multicenter drug trials).

Patients under the age of 18, are primarily seen by the neurologist, with consultations to other services such as gastroenterology, bone health, orthopedics, cardiology, etc.  Where possible, particularly for patients coming from outside Ottawa, appointments with other medical services are made on the same day as the Rett Syndrome Clinic is held.

*Patients over age 18 are seen on a consultation basis, with written recommendations made to the referring physician concerning future tests, suggested sub-specialist consultations and treatment options.

About the Team

Dr Peter Humphreys, Division of Neurology, Rett Syndrome Clinic Head

Renee Brannan, epilepsy nurse and Rett Syndrome Clinic Coordinator

Dr Melissa Carter, Department of Genetics

Dr Leanne Ward, Division of Endocrinology, specialist in bone health

The nurse coordinator and occupational therapist are available if required, and a social worker is also available upon request.  Consultations can also be made to community physiotherapists.

Clinic Location Clinic C-9 Rett Syndrome Clinic CHEO 401 Smyth Road Ottawa, ON K1H 8L1

How To Make An Appointment

Physician referral is required.  This can be done by sending a fax to 613-738-4879.

To Schedule an appointment, call 613-737-7600 ext. 1346.  For more information, parents and health care professionals may contact Renee Brannan RN, Nurse Coordinator at 613-737-7600 ext. 2159, Monday to Friday from 7:00 a.m. to 3:00 p.m.