Genetic Connective Tissues Disorders Clinic   at
Stollery Children's Hospital
Estimated time to routine appointment: Within 12 months
Alberta Health Services - Provincial Health Services
SERVICE DESCRIPTION
Provides genetic assessment, screening, diagnosis, counselling and treatment to Albertans across the lifespan who are at risk for or affected with connective tissues disorders.The consultation service begins with an assessment of a patient's personal and family history for features of a suspected condition.

Genetic counselling is then provided to patients who meet the criteria, to share genetic risk information, discuss the benefits, risk, limitations of genetic testing if indicated and available for the patient and / or at risk-relatives.

Examples of connective tissue disorders include Marfan syndrome, Ehlers-Danlos syndrome, Stickler syndrome, and many others.

Individuals and families referred may include pregnant couples, newborns, children or adults.

For more information visit the Clinical & Metabolic Genetics website.
Provides genetic assessment, screening, diagnosis, counselling and treatment to Albertans across the lifespan who are at risk for or affected with connective tissues disorders.The consultation service begins with an assessment of a patient's personal and family history for features of a suspected condition.

Genetic counselling is then provided to patients who meet the criteria, to share genetic risk information, discuss the benefits, risk, limitations of genetic testing if indicated and available for the patient and / or at risk-relatives.

Examples of connective tissue disorders include Marfan syndrome, Ehlers-Danlos syndrome, Stickler syndrome, and many others.

Individuals and families referred may include pregnant couples, newborns, children or adults.

For more information visit the Clinical & Metabolic Genetics website.
ROUTINE REFERRAL PROCESS
Professional Referral Required.
Triage and wait list is based on information received at the time of referral.
Professional Referral Required.
Triage and wait list is based on information received at the time of referral.
URGENT REFERRAL PROCESS
Urgent referral indications:
  • Genetic diagnosis is required for immediate management.
  • Pregnancy that requires a genetic risk assessment.
Urgent referral indications:
  • Genetic diagnosis is required for immediate management.
  • Pregnancy that requires a genetic risk assessment.
EMERGENCY REFERRAL PROCESS
Please direct patients to the nearest Emergency Department or Urgent Care Facility.
Please direct patients to the nearest Emergency Department or Urgent Care Facility.
ELIGIBILITY REQUIREMENTS
This service is available to individuals who are affected or at moderate to high risk for inherited connective tissue disorders. Risk level is determined by genetic risk evaluation of the individual's medical and family history.

Hypermobile EDS also known as EDS Type III or Benign hypermobility syndrome do not meet our inclusion criteria.

For EDS management guidelines, please refer to EDS Guidelines
This service is available to individuals who are affected or at moderate to high risk for inherited connective tissue disorders. Risk level is determined by genetic risk evaluation of the individual's medical and family history.

Hypermobile EDS also known as EDS Type III or Benign hypermobility syndrome do not meet our inclusion criteria.

For EDS management guidelines, please refer to EDS Guidelines
ADDITIONAL SERVICE DETAILS
1. Hypermobile EDS also known as EDS Type III or Benign hypermobility syndrome do not meet our inclusion criteria.  There is no genetic testing for this condition.
2. Molecular testing has recently become available for connective tissue disorders noted above. If your patient was previously seen when testing was not available, a re-referral would be accepted.
3. We would encourage a re-referral if seen in the past and there is a change to family or medical history.
1. Hypermobile EDS also known as EDS Type III or Benign hypermobility syndrome do not meet our inclusion criteria.  There is no genetic testing for this condition.
2. Molecular testing has recently become available for connective tissue disorders noted above. If your patient was previously seen when testing was not available, a re-referral would be accepted.
3. We would encourage a re-referral if seen in the past and there is a change to family or medical history.
COMMUNICATION PROCESS
  • Communication of referral receipt to referral source will occur within 7 calendar days.
  • Communication of appointment details or wait list status to patient and referral source will occur within 14 calendar days.
  • Communication of initial appointment outcomes to referral source will occur within 30 calendar days.
 
PHONE
780-407-7333
FAX
780-407-6845
REFERRAL PHONE
780-407-7333
REFERRAL FAX
780-407-6845
LINKED SPECIALISTS
CLICK + TO VIEW REFERRAL GUIDELINES
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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
Timing
Additional Details
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Connective tissue hereditary disorder
information pertaining to family history relevant to referral. Affected individual's full name and relation required.
 
At the time of referral. Required for Triage.
All specialist consultations including: -Cardiology, - Respirology, - Orthopedics, - Ophthalmology, - Genetics, - Rheumatology.
 
At the time of referral. Required for Triage.
Specific cardiac Investigation results required: -Echocardiogram(s), -Cardiac MRI/MRAs -Imaging (X-rays, CTs, MRIs)
 
At the time of referral.
Please ensure an echocardiogram to evaluate aortic dimensions is completed and results made available to our clinic prior to appointment. For adult patients we recommend North-West Cardio-Diagnostics. For pediatric patients :  ACHCardiology.
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Familial abdominal aortic aneurysm
information pertaining to family history relevant to referral. Affected individual's full name and relation required.
 
At the time of referral. Required for Triage.
All specialist consultations including: -Cardiology, - Respirology, - Orthopedics, - Ophthalmology, - Genetics, - Rheumatology.
 
At the time of referral. Required for Triage.
Specific cardiac Investigation results required: -Echocardiogram(s), -Cardiac MRI/MRAs -Imaging (X-rays, CTs, MRIs)
 
At the time of referral.
Please ensure an echocardiogram to evaluate aortic dimensions is completed and results made available to our clinic prior to appointment. For adult patients we recommend North-West Cardio-Diagnostics. For pediatric patients :  ACH Cardiology.
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Loeys-Dietz syndrome
information pertaining to family history relevant to referral. Affected individual's full name and relation required.
 
At the time of referral. Required for Triage.
All specialist consultations including: -Cardiology, - Respirology, - Orthopedics, - Ophthalmology, - Genetics, - Rheumatology.
 
At the time of referral. Required for Triage.
Specific cardiac Investigation results required: -Echocardiogram(s), -Cardiac MRI/MRAs -Imaging (X-rays, CTs, MRIs)
 
At the time of referral.
Please ensure an echocardiogram to evaluate aortic dimensions is completed and results made available to our clinic prior to appointment. For adult patients we recommend North-West Cardio-Diagnostics. For pediatric patients :  ACH Cardiology.
+-
Marfan's syndrome
information pertaining to family history relevant to referral. Affected individual's full name and relation required.
 
At the time of referral. Required for Triage.
All specialist consultations including: -Cardiology, - Respirology, - Orthopedics, - Ophthalmology, - Genetics, - Rheumatology.
 
At the time of referral. Required for Triage.
Specific cardiac Investigation results required: -Echocardiogram(s), -Cardiac MRI/MRAs -Imaging (X-rays, CTs, MRIs)
 
At the time of referral.
Seen in ophthalmology clinic
 
See note

1. Echocardiogram as above.

2. Please refer your patient for an ophthalmology assessment, if not already done. We recommend Dr. Patrick Wyse (Bow River Professional Centre).

PATIENT APPOINTMENT INFORMATION
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MISSED APPOINTMENT GUIDELINES
A re-referral is required if the patient does not attend 2 booked appointments.
A re-referral is required if the patient does not attend 2 booked 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, Medical Sciences Building
8440 112 Street
Edmonton Alberta
T6G 2B7
PATIENT APPOINTMENT INSTRUCTIONS
 
DIRECTIONS
The Stollery Children’s Hospital is located in the Walter C. Mackenzie centre located on the University of Alberta campus. There is a patient drop-off and pickup area at the main entrance of the hospital on the east building on 112th street and 84th avenue, directly north of the University of Alberta and Stollery Children’s Hospital’s emergency departments.                                                                                     
Bus stops at 112 and 114 St
LRT Health Sciences station is located west across 114 St.
The Stollery Children’s Hospital is located in the Walter C. Mackenzie centre located on the University of Alberta campus. There is a patient drop-off and pickup area at the main entrance of the hospital on the east building on 112th street and 84th avenue, directly north of the University of Alberta and Stollery Children’s Hospital’s emergency departments.                                                                                     
Bus stops at 112 and 114 St
LRT Health Sciences station is located west across 114 St.
 
PHONE
780-407-7333
 
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.
 
EMAIL
WEBSITE
https://www.ahs.ca/info/page15513.aspx
VIRTUAL APPOINTMENT INFORMATION
 
 
WHEELCHAIR ACCESSIBILITY
Yes

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.

 

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