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Saskatchewan Adult PKU Program

Program Description: Adult Phenylketonuria (PKU) Clinic

Phenylketonuria (PKU) is a rare inherited disorder that affects one in 12,000 children born in Canada. The treatment of PKU requires lifelong management of phenylalanine (phe) levels through diet. If left untreated, higher levels of phe can cause damage to the brain and intellectual disability.

The provincial PKU clinic, located at the Alvin Buckwold Child Development Program in Saskatoon, provides a family-centered, interdisciplinary service which includes diagnosis, assessment, nutrition management and genetic counseling. The core PKU team includes a physician, a nurse coordinator, a registered dietitian and genetic counselor. Where required or advised, access to social work support is also available.

Multi-Disciplinary Team: The care to clients provided by the physician is supported by a multi-disciplinary team who undertake the following roles:

Nurse Coordinator:  Ensures the continuity of care through clinical triage coordination, waitlist management, and communication with the referring physician, the PKU physician and the PKU interdisciplinary team members.

Genetic Counselor:  Educates clients and families about PKU including maternal PKU risks, the inheritance of PKU, the availability of genetic testing, as well as the reproductive and prenatal testing options. Genetic counseling is available both in Saskatoon and via telehealth for patients outside of Saskatoon.

Registered Dietitian:  Assesses nutritional intake and requirements, develops and implements individualized nutritional care plan for clients, and adjusts care plans to help clients meet their nutritional needs while achieving controlled phe levels. The RD also provides education and counseling to clients and families to help carry out the specialized diet for each patient and assists the Nurse Coordinator with clinical triage. RD support is available in person at the clinic and via telephone, telehealth and occasional inter-provincial travel by the RD.


RESOURCES

1.      Canadian PKU and Allied Disorders Inc.

A non-profit association of volunteers who are dedicated to providing accurate news, information and support to families and professionals dealing with phenylketonuria (PKU) and similar, rare, Inherited Metabolic Disorders. Our mission is to improve the lives of people with PKU and allied disorders and the lives of their families.  http://canpku.org/

2.      How Much PHE

A comprehensive diet-management system for PKU with phe/pro/exchange and calorie values for more than 7,000 foods. Easily record, chart, and export your intake and blood levels.  https://howmuchphe.org/

3.      National Food Distribution Center

The National Food Distribution Center focuses exclusively on the genetic disorders known as Inborn Errors of Metabolism by offering the widest selection and inventory of specialized products found in Canada.  https://nfdc.info/home.php

4.      The Canadian Nutrient File

A comprehensive computerized database that reports up to 152 nutrients such as vitamins, minerals, protein, energy, fat, and more. It is updated regularly and allows Canadians to search the nutrient values for specific foods.  http://food-nutrition.canada.ca/cnf-fce/index-eng.jsp.

5.      Inherited Metabolic Disease Benefits

A list of select formula, low protein foods, and drugs that are covered in Saskatchewan under the Inherited Metabolic Disease Benefits. This list is reviewed and updated annually.  http://formulary.drugplan.health.gov.sk.ca/PDFs/InheritedMetabolicDiseaseBenefitList_Aug_2016.pdf

Last Modified: Thursday, September 7, 2017 |
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