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HomeClinics, Services & ProgramsA-Z DirectoryCystic Fibrosis Clinic

Cystic Fibrosis Clinic

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Children, youth and families   Healthcare providers

About the Cystic Fibrosis Clinic

The CHEO Cystic Fibrosis (CF) Clinic is located in clinic C9. We see children from just after birth until their 18th birthday, with cystic fibrosis. We see children in the CF clinic with a confirmed diagnosis of CF, or with a likely diagnosis of CF, and can arrange to see infants and children with an “indeterminate” diagnosis of CF based on CF newborn screening.

About our team 

Our team includes four physicians, a nurse case-manager, a physiotherapist, and dietician, a social worker, a pharmacist and a respiratory therapist. 

Information for children, youth and families 

Before your appointment

Please sign-up for a MyChart account, prior to your first visit.  Our scheduling team will contact you by phone to schedule an appointment.  If something changes and you need to reschedule your appointment, please let us know at least 24-48 hours in advance if you are unable to make it by calling 613-737-7600 x2222.  No-shows or frequent cancellations may result in discharge from the service.  

What to expect during your appointment

CF clinics take place on Thursday mornings. Please arrive at the time your appointment is scheduled.  

In general, you should expect to be here for 60-90 minutes for a new patient appointment, and 45-60 minutes for a follow-up appointment. Given our area of practice, urgent situations may arise unexpectedly. We appreciate your patience should we need to spend extra time with a patient ahead of you.  

CHEO is a teaching hospital affiliated with the University of Ottawa. As part of our commitment to the education of our future healthcare providers, learners of various levels and disciplines (ex. nursing students, medical students, medical residents, etc.) may be involved in your care. 

During visits to the CF clinic, your child will meet the CF physician and CF nurse, and will likely meet the CF physiotherapist, CF dietician, CF pharmacist, and CF social worker. During clinic visits, your child will normally have: 

  • weight and height measurements 
  • a CF sputum culture or CF throat swab (if they can’t produce sputum) 
  • a pulmonary function test if your child is 6 years of age or older and can cooperate with the test 

Once a year, your child will have a chest X-ray and blood work. Patients should avoid, if possible, using salbutamol (or Ventolin – the blue inhaler) for 4 hours prior to their visit to CF Clinic.By 18 years of age, youth will be transitioned to the Adult CF Clinic – usually at the Ottawa Hospital, General Campus.  We are located in Clinic  C-9 on the main floor of CHEO’s main campus (401 Smyth Road). Please bring a list of any medications your child is currently taking, and any special physiotherapy equipment (such as a PEP mask, physiotherapy vest, etc.). We encourage you to follow  CF Canada infection control guidelines when visiting CHEO and our clinic. 

After your appointment

Your Respirologist will let you know whether any additional appointments or testing are required after your visit.

Frequently asked questions

How can I make a referral?

Children must be referred by another CF Clinic, or by a physician or nurse practitioner. Many of our referrals come from provincial or territorial newborn screening programs. After a referral is received, we will notify the referring Physician or Nurse Practitioner whether the referral has been accepted or denied, and if accepted we will provide an estimated wait time. This wait time can vary based on demand and urgency. Once we have an appointment spot to offer, our Scheduling Team will reach you by phone to schedule an appointment.

Who should I contact if I am worried or have questions?

For any emergency, call 911.  This includes emergencies involving your child’s cystic fibrosis condition. 

Our team cannot provide information to families of children not already seen by a CHEO CF Clinic physician.  After your child has been seen, we encourage you to register for CHEO My Chart and contact us though MyChart.

You can contact health professionals who are part of your CF care team through MyChart.CF Clinic Nurse-Coordinator: 613-737-7600 ext. 2214. The nurse coordinator is available by phone Monday to Thursday 8:00-4:00. A CF physician can be reached for urgent matters when the nurse is not available, from 8am till 11 pm, 7 days a week. Please call 613-737-7600 extension 0, indicate that your child has CF, and ask for the CF physician on call. When you speak to the physician, please indicate the name of your child, or have the child talk to the physician directly, if they’re old enough. Physicians in the community or in an emergency department can contact a CF physician through this number 24/7.

Note that for urgent matters (not emergency situations), you should contact the nurse-coordinator or CF physician; do not use MyChart or voice mail in this situation. For emergency situations, please proceed to the Emergency Department or call 911. 

Before contacting the CF physician, if it’s not a serious emergency, please consult our CF resources and fact sheets. These can help you deal with many common CF problems and help determine how urgent the issue is. 

Sign up for MyChart to access your CHEO health record anywhere, any time. 
MyChart is a secure, online patient portal that connects you to parts of your CHEO electronic health record and allows you to send two-way secure communication to your care team, complete any questionnaires your care team sends and much more. 
To learn more about MyChart and sign up, visit our MyChart page and fill out the MyChart Access Request Form.

Looking for more resources or supports on Cystic Fibrosis? 

  • CHEO - Cystic Fibrosis resources and supports
  • Cystic Fibrosis Canada: 
    • What is cystic fibrosis?
    • Living with cystic fibrosis

Information for healthcare providers

Our clinic provides CF care in accordance with national standards. Visits are normally scheduled every 3 months, and include assessments by a CF physician, nursing, physiotherapy, dietician, and social work. Respiratory cultures are done every 3 months. X-rays and blood work are done annually. Youth are transitioned to an adult CF clinic (typically the CF Clinic at the Ottawa Hospital, General Campus) by the time they are 18.

Make a referral

Our clinic is now accepting e-referrals with Ocean!

If you’re already on Ocean, look us up via your account by searching "CHEO".
If you don’t yet have an Ocean account, no problem - signing up is free.

Make a referral in Ocean

You can make an e-referral using Ocean, or send a referral by mail or fax to our address below.

Referral criteria and eligibility
Reason for referral Criteria Mandatory information to include in referral Other information
Known diagnosis of cystic fibrosis

Must be referred by another CF clinic, or by a physician or nurse practitioner 

Recent clinical note, past history including hospitalizations and surgeries, genetics, sweat chloride, PFT results, culture results, X-ray report, blood work

Special needs (e.g. disabilities, need for a translator, infection control [MRSA, Cepacia, atypical mycobacteria])
Unclear or “indeterminate” diagnosis of cystic fibrosis

Must be referred by a physician or nurse practitioner

Symptoms, growth chart, past history including hospitalizations and surgeries, genetics, sweat chloride, PFT results, culture results, X-ray report, blood work

Special needs (e.g. disabilities, need for a translator, infection control [MRSA, Cepacia, atypical mycobacteria])

Positive newborn screening result Referral from a provincial or territorial newborn screening program and referring physician or nurse practitioner Preliminary genetics and sweat chloride results Special needs (e.g. disabilities, need for a translator, infection control [MRSA]).

Contact us 

Cystic Fibrosis Clinic (C-9), CHEO 
401 Smyth Road  
Ottawa, ON K1H 8L1  
Fax: 613-738-4298  

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