The Ontario Advisory Committee on Newborn and Childhood Screening is an independent advisory body of health and other professionals with expertise in newborn and childhood screening.

To advise the Ministry of Health and Long Term Care on its policies and programs related to newborn and childhood screening.

To fulfill their mandate, the Ontario Advisory Committee on Newborn and Childhood Screening will :

1. Review and provide advice regarding provincial policies, standards and guidelines relating to Ontario's newborn and childhood screening program, including but not limited to :
• modification or extension of the screening program in the light of advances in screening technology and the Ontario experience with newborn and childhood screening in particular;
• to advise on the Ministry's reimbursement policy for special dietary products and drugs required for the management of the diseases, including :
• the types of disorders to be covered;
• the types of products to be covered for each disease;
• educational programs about newborn and childhood screening for both health professionals and the public;
• specific newborn and childhood screening protocols and procedures;
• specific areas of newborn and childhood screening, including surveillance, genetic counseling issues;
• any other related issue at the request of the Minister of Health and Long-Term Care or her/his delegate.
2. Review requests and provide advice to determine eligibility of individuals with inborn metabolic disorders for funding for specialized drugs, medical foods and low-protein foods, which are outside the approved coverage list.
3. Review of the effectiveness of the Ontario newborn and childhood screening program periodically to provide advice to the Ministry, including assessment of :
• the completeness and timeliness of sampling;
• the efficiency of the transportation of samples;
• the quality of testing and interpretation of test results;
• the efficiency of retrieval of infants and children with positive tests;
• the efficiency and effectiveness of the process of diagnostic testing, and;
• the outcome of treatment of infants and children with disorders detected by the program.
4. Prepare and recommend to the Ministry advisory statements and bulletins for healthcare providers, to address new newborn and childhood screening developments or new screening issues of provincial significance, as they arise.
5. For the purpose of providing advice to the Ministry, collaborate with appropriate academic, research and professional bodies to :
• develop performance indicators;
• develop a province-wide registry of patients with conditions identified in the course of newborn and childhood screening;
• maintain statistics on the incidence of conditions identified in the Ontario program;
• develop audit tools;
• identify research questions and facilitate the undertaking of research on the impact of newborn and childhood screening through studies on the Ontario experience;
• review any other product, tool or document at the request of the Minister of Health and Long-Term Care or her/his delegate.
6. Report annually to the Deputy Minister of Health & Long-Term Care on :
• the efficiency and effectiveness of the newborn and childhood screening program;
• the incidence of all disorders screened in Ontario's newborn and childhood screening program;
• the impact of screening and early intervention on the health outcomes of infants and children with disorders identified as a result of screening.

Up to 13 members are appointed in writing for a three-year term by the Deputy Minister of Health and Long Term Care and shall include individuals with strong qualifications in the areas of :

• health outcomes evaluation
• epidemiology
• health technology assessment
• genetics
• the technical aspects of newborn screening
• epidemiological, biological, and behavioural research relating to screening
• bioethics
• healthcare providers

The Director of Ontario’s Newborn Screening Program at the Children’s Hospital of Eastern Ontario (CHEO) will be an ex-officio member of the Committee. The Chair of the Committee will be appointed by the Deputy Minister.

Members may be reappointed for additional terms of three years each.

The Committee may establish subcommittees and workgroups to perform/work on tasks/projects within the Committee’s terms of reference.

The Deputy Minister of Health and Long Term Care may appoint, in writing, experts in particular fields, including persons that are not members of the Committee, to a subcommittee or workgroup.

Parents/public will be consulted on an issue specific basis.

The Committee will report to the Deputy Minister of Health & Long-Term Care.

The Committee will meet as often as necessary to achieve the goals of the newborn and childhood screening program, but no less frequently than every 3 months.

Administrative support to the Committee will be provided by the Integrated Policy and Planning Division of the MOHLTC.

Call the ministry INFOline at 1-866-532-3161
TTY: 1-800-387-5559

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