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Clinical and Metabolic Genetics Program - North   at
Medical Sciences Building
Specialty: Genetics
Connect Care Department: EDM STO MSB CLINICAL GENETICS
Estimated time to routine appointment: Greater than 18 months
Alberta Health Services - Provincial Health Services
SERVICE DESCRIPTION
Provides assessment, diagnosis and counselling, as well as screening and management recommendations, to Albertans across the lifespan who are at risk for, or affected by, genetic conditions(s).Provides services for all Albertans across the lifespan who are at risk, or affected with a genetic condition(s). Individuals and families referred may include pregnant couples, newborns, children or adults.

The Clinical Genetics team provides genetic assessment, screening, diagnosis, genetic counselling, and treatment (when available).

The Genetics Cancer team provides genetic counselling and testing to investigate the possibility of an inherited form of cancer in affected individuals and thereafter, potentially, their relatives.

The Inherited Metabolic team provides diagnosis, lifelong treatment, monitoring, education and support for individuals and families impacted by metabolic conditions.Both services focus on patient and family centred care and, as well, are actively involved in research to best support quality care for patients and families.

For more information visit the Clinical & Metabolic Genetics website.
Provides assessment, diagnosis and counselling, as well as screening and management recommendations, to Albertans across the lifespan who are at risk for, or affected by, genetic conditions(s).Provides services for all Albertans across the lifespan who are at risk, or affected with a genetic condition(s). Individuals and families referred may include pregnant couples, newborns, children or adults.

The Clinical Genetics team provides genetic assessment, screening, diagnosis, genetic counselling, and treatment (when available).

The Genetics Cancer team provides genetic counselling and testing to investigate the possibility of an inherited form of cancer in affected individuals and thereafter, potentially, their relatives.

The Inherited Metabolic team provides diagnosis, lifelong treatment, monitoring, education and support for individuals and families impacted by metabolic conditions.Both services focus on patient and family centred care and, as well, are actively involved in research to best support quality care for patients and families.

For more information visit the Clinical & Metabolic Genetics website.
ELIGIBILITY REQUIREMENTS

This service is available to individuals who are affected or at moderate to high risk for inherited genetic conditions. Risk level is determined by genetic risk evaluation of the individual's medical and family history.  

Examples of reasons for which the Program may DECLINE referrals include:

  1. Patient Resides Outside of Catchment Area Referrals for British Columbia or Saskatchewan residents.  Metabolic referrals may be accepted on a case-by-case basis.
  2. Personal or Family history of Complex Traits / Multifactorial Conditions, such as Celiac Disease and MTHFR.
  3. Direct-to-consumer genetic test results
  4. Patients found to have variants in genes associated with susceptibility for a complex trait are not eligible for a consultation with the Program.
  5. Personal or family history of hypermobility, including hypermobile Ehlers Danlos Syndrome.
  6. Hemochromatosis or family history of hemochromatosis
  7. Requests for genetic testing for a specific condition that can be facilitated by the referring clinician.
  8. Non-medical indications, such as:
    ) paternity testing 
  • ancestry testing 
  • twin zygosity testing for information purposes
  • limited or unknown family history

Note that patients found to have mutations through research or direct to consumer laboratories may be accepted IF confirmatory testing in a clinical lab is provided with the referral.

Please note that, due to severe Clinical Geneticist Shortages:
  1. Referrals for residents living in Red Deer (or south of Red Deer)should currently be sent to the Clinical and Metabolic Genetics Program at the Alberta Children's Hospital (fax # 403-476-8752).  
  2. Cancer, cardiac, genetic counselling only, metabolic and neurogenetics referrals will continue to be accepted by the Northern program.
  3. Target access times may be extended

This service is available to individuals who are affected or at moderate to high risk for inherited genetic conditions. Risk level is determined by genetic risk evaluation of the individual's medical and family history.  

Examples of reasons for which the Program may DECLINE referrals include:

  1. Patient Resides Outside of Catchment Area Referrals for British Columbia or Saskatchewan residents.  Metabolic referrals may be accepted on a case-by-case basis.
  2. Personal or Family history of Complex Traits / Multifactorial Conditions, such as Celiac Disease and MTHFR.
  3. Direct-to-consumer genetic test results
  4. Patients found to have variants in genes associated with susceptibility for a complex trait are not eligible for a consultation with the Program.
  5. Personal or family history of hypermobility, including hypermobile Ehlers Danlos Syndrome.
  6. Hemochromatosis or family history of hemochromatosis
  7. Requests for genetic testing for a specific condition that can be facilitated by the referring clinician.
  8. Non-medical indications, such as:
    ) paternity testing 
  • ancestry testing 
  • twin zygosity testing for information purposes
  • limited or unknown family history

Note that patients found to have mutations through research or direct to consumer laboratories may be accepted IF confirmatory testing in a clinical lab is provided with the referral.

Please note that, due to severe Clinical Geneticist Shortages:
  1. Referrals for residents living in Red Deer (or south of Red Deer)should currently be sent to the Clinical and Metabolic Genetics Program at the Alberta Children's Hospital (fax # 403-476-8752).  
  2. Cancer, cardiac, genetic counselling only, metabolic and neurogenetics referrals will continue to be accepted by the Northern program.
  3. Target access times may be extended
Referral instructions for primary care, community care, private
providers etc. who do not send referrals via Connect Care. 
REFERRAL PROCESS - FOR NON-CONNECT CARE USERS
Complete the referral form and fax it to the service using the contact information in this profile.
NOTE: If the patient is pregnantfax these referrals to the Maternal Fetal Medicine Department directly.
EMERGENT REFERRALS (eg. positive newborn screen):
  1. Call the University of Alberta/Stollery Children's Hospital Switchboard and ask to speak to either the Medical Geneticist or the Metabolic Geneticist on-call.
  2. Indicate on the referral "emergent" and fax the completed referral form to the service using the contact information in this profile.
URGENT REFERRALS (eg. a genetic diagnosis will impact management/treatment decisions):  
  1. Indicate on the referral "urgent" and fax completed referral form to the service using the contact information in this profile. 
  2. Clearly indicate how management and/or treatment would altered based on a diagnosis
Complete the referral form and fax it to the service using the contact information in this profile.
NOTE: If the patient is pregnantfax these referrals to the Maternal Fetal Medicine Department directly.
EMERGENT REFERRALS (eg. positive newborn screen):
  1. Call the University of Alberta/Stollery Children's Hospital Switchboard and ask to speak to either the Medical Geneticist or the Metabolic Geneticist on-call.
  2. Indicate on the referral "emergent" and fax the completed referral form to the service using the contact information in this profile.
URGENT REFERRALS (eg. a genetic diagnosis will impact management/treatment decisions):  
  1. Indicate on the referral "urgent" and fax completed referral form to the service using the contact information in this profile. 
  2. Clearly indicate how management and/or treatment would altered based on a diagnosis
REFERRAL PROCESS - FOR CONNECT CARE USERS
Send an Internal Referral using the Ambulatory Referral Order to Genetics, type EDM STO MSB CLINICAL GENETICS in the “To Department” section and complete order.
Send an Internal Referral using the Ambulatory Referral Order to Genetics, type EDM STO MSB CLINICAL GENETICS in the “To Department” section and complete order.
ADDITIONAL SERVICE DETAILS
Please encourage your referred patient to visit: www.ahs.ca/genetics. Excellent physician resources are available on this site.

As genetic testing is advancing, please re-refer any patient seen in the past who may benefit from a review of eligibility for further genetic testing.

If patient was seen in the past and no diagnosis was made, we are now requesting a re-referral as we are unable to maintain on-time scheduled follow-ups.
Confirmation of referral receipt and estimated wait time will be sent by fax to the referring physician. Wait times vary by referral indication.
Please encourage your referred patient to visit: www.ahs.ca/genetics. Excellent physician resources are available on this site.

As genetic testing is advancing, please re-refer any patient seen in the past who may benefit from a review of eligibility for further genetic testing.

If patient was seen in the past and no diagnosis was made, we are now requesting a re-referral as we are unable to maintain on-time scheduled follow-ups.
Confirmation of referral receipt and estimated wait time will be sent by fax to the referring physician. Wait times vary by referral indication.
COMMUNICATION PROCESS
  • Referral receipt to referring source within 7 days.
  • Acceptance via appointment details or wait list status letter to referring source and patient within 90 days.
  • Appointment outcome to referral source within 30 days.
 
CLICK + TO VIEW REFERRAL GUIDELINES
Routine Reason for Referral
Access Targets convey the clinically appropriate timeframe patients should be seen within, by reason for referral and priority level.
Access Target
Required Information/Investigations
Investigation Timing
Additional Details
Ehlers-Danlos syndrome, type 3
Medication List (dose, frequency, route)
 
Within 1 month

Past medical history
 
Within 1 month

Not accepted as referrals
 
Not accepted as referrals
Referrals for hypermobile Ehlers-Danlos Syndrome (EDS) / EDS type III or benign hypermobility syndorme do NOT meet our inclusion criteria and will not be accepted.

For questions, please contact the Main Genetics desk (780-407-7333) and ask to speak with the Genetic Counsellor dealing with Connective Tissue Disease

Family history of hereditary disease
Medication List (dose, frequency, route)
 
Within 1 month

Past medical history
 
Within 1 month

Documentation of genetic diagnosis / testing in relative (where possible)
 
At time of referral

Family History Form
 
After referral; patient will be contacted to complete an online family history form
Assessment of patient's risk for a genetic condition present in the family (and potential genetic testing) is highly dependent on confirmation of that relative's diagnosis / genetic test result.
Preconception (woman/couple concerned about close relative affected by a genetic condition; presence of consanguinity between couple).

Genetic disorder carrier
Medication List (dose, frequency, route)
 
Within 1 month

Past medical history
 
Within 1 month

Family History Form
 
After referral; patient will be contacted to complete an online family history form

Test results relevant to reason for referral (eg, genetic test result, hemoglobinopathy screen)
 
At time of referral
1. Known carrier of a genetic condition (test results required).
2. Couples at increased risk for a child impacted by selected genetic condition(s) due to ethnicity (limited to: Ashkenazi Jewish population, French Canadians of the Saguenay-Lac-St-Jean/Charlevoix or Gaspesie Bas St. Laurent regions, Hutterite population)

Genetic syndrome
Medication List (dose, frequency, route)
 
Within 1 month

Past medical history
 
Within 1 month

Consultation report / test results relevant to reason for referral not available on Netcare.
 
At time of referral; required for triage

Family History Form
 
After referral; patient will be contacted to complete an online family history form

Molecular, cytogenetic (chromosomal microarray), and biochemical genetic test results
 
At time of referral; required for triage
Patient has been diagnosed or has features of a genetic condition, warranting a referral for genetic evaluation or genetic counselling +/- diagnosis.

Hereditary breast and ovarian cancer syndrome
Medication List (dose, frequency, route)
 
Within 1 month

Past medical history
 
Within 1 month

Family History Form
 
After referral; patient will be contacted to complete an online family history form
Patient has been diagnosed with early onset cancer, or has a strong family history consistent with a cancer-predisposing syndrome.

Hereditary cancer-predisposing syndrome
Medication List (dose, frequency, route)
 
Within 1 month

Past medical history
 
Within 1 month

Family History Form
 
After referral; patient will be contacted to complete an online family history form
Patient has been diagnosed with early onset cancer, or has a strong family history consistent with a cancer-predisposing syndrome.
PATIENT APPOINTMENT INFORMATION
 
MISSED APPOINTMENT GUIDELINES
Missed appointments are minimized by requiring a re-referral after two missed appointments.
Missed appointments are minimized by requiring a re-referral after two missed appointments.
 
HOURS OF OPERATION
Monday: 8:00 am - 4:00 pm
Tuesday: 8:00 am - 4:00 pm
Wednesday: 8:00 am - 4:00 pm
Thursday: 8:00 am - 4:00 pm
Friday: 8:00 am - 4:00 pm
   
 
ADDRESS
Room 8-53
8440 112 Street
Edmonton Alberta
T6G 2H7
PATIENT APPOINTMENT INSTRUCTIONS
  • Bring your Alberta health care card and a piece of government issued photo ID.
  • Check in at reception 15 minutes prior to your scheduled appointment time.
  • You may bring a family member or significant other during your consultation.
  • Please make sure to have someone with you if you are unable to communicate in English.
  • Bring your Alberta health care card and a piece of government issued photo ID.
  • Check in at reception 15 minutes prior to your scheduled appointment time.
  • You may bring a family member or significant other during your consultation.
  • Please make sure to have someone with you if you are unable to communicate in English.
 
DIRECTIONS
Genetic Clinic location at the Medical Sciences Building.
Bus stops are located on 112 and 114 Streets NW
- LRT station is located just west across 114 Street NW.
Please enter via the University of Alberta Hospital (Walter C Mackenzie Centre).  A hallway in the Northeast (near Bernard Snell Hall) connects the hospital to the Medical Sciences Building.  Once through the double doors, take the east elevators to the 8th floor.  Do not use the west elevators as there is no access to the Genetics Clinic from the 8th floor.

Prenatal Genetic cases may be seen at the Royal Alexandra Hospital's Maternal Fetal Medicine Department.

Genetic Clinic location at the Medical Sciences Building.
Bus stops are located on 112 and 114 Streets NW
- LRT station is located just west across 114 Street NW.
Please enter via the University of Alberta Hospital (Walter C Mackenzie Centre).  A hallway in the Northeast (near Bernard Snell Hall) connects the hospital to the Medical Sciences Building.  Once through the double doors, take the east elevators to the 8th floor.  Do not use the west elevators as there is no access to the Genetics Clinic from the 8th floor.

Prenatal Genetic cases may be seen at the Royal Alexandra Hospital's Maternal Fetal Medicine Department.

 
PHONE
780-407-7333
TOLL FREE PHONE
1-855-935-7333
 
PARKING INSTRUCTIONS

Rates apply 24 hours per day, and are in effect for all public parkers, including those with provincially issued placards for persons with disabilities. Public parking is GST exempt.

Pay by Plate machines accept Canadian coins or credit card(Visa, MasterCard, American Express). Maximum 28 Canadian coins per transaction, no pennies. Machines provide no change.

Pay on Foot machines accept Canadian coins and bills, or credit card (Visa, MasterCard, American Express). These machines will provide change.

Parking Office accepts payment by cash, credit  card, debit or cheque.

Rates apply 24 hours per day, and are in effect for all public parkers, including those with provincially issued placards for persons with disabilities. Public parking is GST exempt.

Pay by Plate machines accept Canadian coins or credit card(Visa, MasterCard, American Express). Maximum 28 Canadian coins per transaction, no pennies. Machines provide no change.

Pay on Foot machines accept Canadian coins and bills, or credit card (Visa, MasterCard, American Express). These machines will provide change.

Parking Office accepts payment by cash, credit  card, debit or cheque.

 
VIRTUAL APPOINTMENT INFORMATION
 
 
WHEELCHAIR ACCESSIBILITY
N/A

The primary purpose of the All Locations list is to let the user easily access any location of a healthcare service without going back to the main search screen.

The locations listed have 3 background colors:
  • Green means the healthcare service@location has referral information attached to it.
  • Brown means the healthcare service@location never had referral information attached to it, or it has unpublished referral information.
  • Red means
    • IA changed the healthcare service@location's status to something other than Current
    • It was deleted if it is an ARD healthcare service@location.
Green  and Brown are always at the top of the list. These are the Healthcare Service@Locations with the status of Current.
The Red list at the bottom consists of non-current Healthcare Service@locations that once had Published referral information in the ARD.
If the referral information was never published in ARD the Healthcare Service@location will not show in the Red list.

The secondary purpose of the All Locations list is to allow ARD Administrators to recover (copy) referral information from the non-current Healthcare Service@Locations to ones that are current.

Common Scenario:
A Healthcare Service moves from one location to another. In this case the IA Healthcare Service@Location record will be made defunct (non-current) and a new Healthcare Service@Location record will be created with a current status. In this scenario the captured referral guidelines in ARD can become "orphaned" as they are not attached to any current IA healthcare service.

Categories of non-current or orphaned referral guidelines: INDIVIDUAL and COMMON.
The REFERRAL GUIDELINES section of the profile has the prefix INDIVIDUAL or COMMON to help you choose the method below when transferring referral guidelines from a non-current Healthcare Service@Location to a current healthcare service@location.

Individual referral process
  1. Click on a non-current (Red) Healthcare Service@Location at the bottom of the All Locations list.
  2. The non-current referral info is displayed with the link Copy this Referral Process to another Healthcare Service@Location link on the upper right hand corner. Click on the copy link.
  3. Choose a current location (Green or Brown) from the All Locations list. This will be the Healthcare Service@Location you are pasting the referral info into.
  4. The system will display the Edit Referral Info screen populated with the referral info from the non-current Healthcare Service@Location you viewed in the first step.
  5. Click Save and the referral info is transferred from the non-current Healthcare Service@Location to the current one.
  6. Repeat these steps for each Healthcare Service@Location that needs attention.

Common referral process - 2 sub cases.
Case 1: At least 1 current Healthcare Service@Location with common referral info is with current status for this healthcare service; One or more Healthcare Healthcare Service@Locations where replaced by new one.
  1. Click on any current Healthcare Service@Location whether it has referral info (Green) or not (Brown).
  2. The healthcare service location opens in the Edit Referral Info screen populated with the current common referral info.
  3. Save it. 
  4. All locations will be updated with the common referral information, including all the locations that don't have referral info yet (Brown). The non-current referrals (Red) will also be updated.
Case 2:  All Healthcare Healthcare Service@Locations for a healthcare service are set to a non-current status and replaced by new ones. In this case there is no current additional referral info to copy from, so the only alternative is to pick up the non-current common referral process (Red). Follow the steps described in the section Individual Referral Process above to copy/paste the non-current common referral info to the current healthcare service locations.
Generally we want to replicate current common referral info to new or replaced healthcare service locations. We only resort to copying non-current common referral info if there is no other option.

Remember: Some fields can be location specific with the common referral process:
Parking Instructions, Directions, Parking Map, Wait Time, Referral Phone or Referral Fax.
To update these items you have to edit each Healthcare Service@Location separately.

ADDITONAL NOTES:
  • The info icon after the All Locations drop down will be visible to ARD Administrators.
  • The system doesn't allow you to copy referral information from one non-current Healthcare Service@Location to another.

 

V6.5