Search

Clinical & Metabolic Genetics Program

genetics

The Clinical and Metabolic Program team are passionate about finding new and innovative ways of delivering genetic services for every Albertan.

Need help?

Information for Health Professionals

About Us

Who We Are

Genetics is important to us all.

Our health care team includes genetic doctors, genetic counsellors, registered nurses, dietitians, administrative support staff, as well as other allied health professionals and volunteers.

Our Team

  • Strives to help individuals and families understand the impact of genetics to their health and well-being.
  • Works together to provide individuals and families with personalized genetic services. This may include: genetic assessment, diagnoses, testing, genetic counselling, management and treatment.
  • Supports individuals, as full partners in care, in making informed decisions and choices about their genetic health care.

Involved In

Teaching & Training
As affiliates with both the University of Calgary and Alberta, we are committed to mentoring genetic counselling students, medical students, residents, fellows and our community providers.

Genetic Research
Within and outside of Canada with a focus on improving our understanding of rare genetic diseases so that we can contribute to better health outcomes for children and families.

Our Services

We serve all Albertans across the lifespan and all health disciplines through our Edmonton and Calgary locations, outreach clinics in Medicine Hat, Lethbridge and Red Deer and through the use of telehealth.

Clinical & Metabolic Genetics Subspecialties

My Appointment

Why was I referred?

What is the wait time for my appointment?

How do I contact the clinic with questions?

Why does my family history matter?

What is a consent for release of records?

How long will my appointment be?

Where will my appointment be?

Who will I see?

Will there be medical or other students included at my appointment?

How do I prepare for my appointment?

Will I have to make any decisions?

What happens after my appointment?

Can I be re-referred if things change?


Why was I referred?

You may recall having a discussion with your family doctor or specialist about a referral to the Clinical and Metabolic Genetics Program for a genetic consultation. If you do not understand why you/your child has been referred, or are questioning whether you are interested in your referral, please discuss this with your doctor.

Clinical and Metabolic Genetics Service are available to all Albertans who are affected by, or at risk of a genetic condition. Genetic conditions can affect any body system and any age group.

We receive referrals for many different reasons. Overall the aim is to help individuals and families by providing:

  • A genetic or metabolic diagnosis;
  • Supporting individuals and families in their understanding of the genetic/metabolic condition within their family,
    • How conditions are inherited and who within the family may/may not be at increased risk.
    • What to expect, living with the genetic condition,
  • What genetic testing options are available to help better understand your/your family’s genetic risks.
  • Supporting through the journey of acceptance and decision making,

Some of this may not apply to you, or there may be more we can provide.

How do I contact the clinic with questions?

Calgary

Call 403-955-7373 or
Email [email protected]

Edmonton

Call 780407-7333 or
Toll-free: 1-855-935-7333

What is the wait time for my appointment?

Wait times vary and are determined by the teams based on the reason for your referral.

The approximate wait time for your appointment will be communicated to your referring doctor at the time of your referral.

If for any reason, your health changes while you are waiting, or you become pregnant, let your doctor know as you may be triaged more urgently.

Why does my family history matter?

Our clinics often ask you for a family history. This is a record of health information about you and your close relatives, including children, brothers and sisters, parents, aunts and uncles, nieces and nephews, grandparents, and cousins.

Your family history helps us understand whether you, other family members, or future generations may be at an increased risk of developing a particular genetic condition of concern.

The easiest way to get information is to talk to your relatives about their health and completing a family history form and sharing this with your doctor.

The US Surgeon General has a resource that is easy to complete, . This will give you a head start.

What is a consent for release of records?

Medical records are often requested to confirm a diagnosis in you or a family member.

Medical information from your family history and medical records, are like pieces of a puzzle that are needed to get a better understanding of the bigger genetic picture (we include this as part of your genetic risk assessment) within your family. This information is important in providing you with accurate genetic information. This explanation may be helpful when sharing the consent request with your relative.

Where will my appointment be?

If you live in Northern Alberta:

You will likely be seen at the Stollery Children’s Hospital.

Pregnant women/couples may be seen through Edmonton Maternal Fetal Medicine at the Royal Alex Hospital or the Genetics Clinic at the Stollery Children’s Hospital. This will be shared with you upon receipt of your referral.

If you live in Southern Alberta:

Most appointments are at the Alberta Children’s Hospital.

Pregnant women/couples are seen at the Prenatal Genetics Clinic, co-located with Calgary Maternal Fetal Medicine at the Cambrian Building, located near the Foothills Medical Centre.

Outreach locations are also available in Medicine Hat, Lethbridge or Red Deer for Southern Albertans living closer to these centres.

*Telehealth is also available to support access to services.

How long will my appointment be?

Appointments take about one hour if you are new to the clinic. Follow up appointments may be by phone or in person and take between 1 to 1.5 hours..

Who will I see?

Clinic appointments may include you/your family seeing a geneticist (a doctor who specializes in clinical and metabolic conditions) and/or other members of the team including a genetic counsellor, nurse dietitian and/or pharmacist.

Helpful resources available from Canadian Association of Genetic Counsellors:

Depending on the reason for your referral, a physical examination may be required or specific genetic or other lab or diagnostic imaging testing suggested. Other appointments focus on sharing information, answering your questions and supporting you with additional resources.

Will there be medical or other students included at my appointment?

Our clinics function as a teaching environment to help ensure students in genetic counselling, medical school, or other and health education programs receive education about genetics through their training. You may be asked if it is alright if a student sits in on your appointment. This is extremely valuable to teaching. You will be given the option to accept or decline a student in your appointment. Your choice will not impact the care you receive.

How do I prepare for my appointment?

Think about all your questions:

It is easy to forget questions we may have during a medical appointment. As soon as you know you have an appointment, start writing down questions and bring these in to your appointment.

If you need interpretation services:

Interpretation services are available and often through a telephone interpreter. This is at no cost to the patient and families. If English is not your language spoken at home, you may benefit from an interpreter. The clinic often asks you, but feel free to request one at any time.

Will I have to make any decisions?

We face many decisions about our health.

Genetic testing may be offered to you during your appointment.

The genetic counsellor or doctor will explain the purpose, benefits and limitations of genetic testing to help you make an informed decision about testing.

Genetic testing may provide helpful information for an individual and their family, like clarifying cancer risk, in identifying screening recommendations, and decisions about treatment for cancer.  However, genetic testing results may be unclear or uninformative.

There may be genetic changes found that are not yet well understood, and there may  still be unknown genetic factors, even when available genetic testing shows normal results.

What happens after my appointment?

In some cases, a follow up plan is not required as your first appointment fully addresses the reason for your referral.

In other cases, a plan may be made to see you again by phone or in person once we have gathered further information (by our clinic, you or your doctor) or results of testing.

Afterwards your doctor will be sent a letter going over what was discussed in the appointment.

If anything in this is unclear, you are welcome to contact the clinic again.

Can I be re-referred if something changes?

Yes.

Our ability to provide genetic diagnoses and offer more genetic testing can change over time.

Talk to your doctor if:

  • You have been seen and wonder if there is new genetic testing available to you.
  • Your medical and family history has changed and you wonder if it impacts what was discussed in your original consult.
  • You were previously seen and informed at your original appointment that you should be seen again (such as in 2 years). We ask for re-referrals in these cases.
Innovation & Research

Our Research

Our Program is highly invested in research that helps patients and families in rare disease gene discovery, finding new ways to test and treat genetic conditions and learning more about the impact of genetic conditions on individuals and their families.

You may be informed about a research project and asked if you would like to participate. Be assured that your participation is optional and will not impact your care. All research conducted in our clinics have undergone rigorous review and ethical approval and maintaining your privacy is of the greatest importance.

Our Priorities

  • Rare Disease Diagnosis
  • Inherited Metabolics Diseases & Novel Treatments
  • Precision Health