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About The Canadian MPS Registry

What is a patient registry?

A patient registry is a database that stores information about a group of patients who share the same medical condition. Registries collect information from patients over time. 

What is the purpose of patient registries?

The goal of patient registries is to generate evidence to improve health care and outcomes for people diagnosed with a specific condition. To achieve this goal, patient registries can be used to: 

  1. Better understand the disease and how it changes over time for different patients. 

  2. Evaluate interventions or therapies.  

  3. Contact patients about research opportunities related to their disease.  

Underpinning Values of The Canadian MPS Registry 

The Canadian MPS Registry is part of the Canadian Metabolic Patient Registries. Our underpinning values are as follows: 

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Who was involved in the development of The Canadian MPS Registry?

The following organizations contributed to the development of the patient registry:

Canadian MPS Society logo

The Canadian Society for Mucopolysaccharide & Related Diseases (The Canadian MPS Society)

Patient Organization

The Canadian MPS Society is a patient organization that serves  all Canadians affected by MPS and related diseases. 

INFORM RARE logo
CHEO Research Institute logo
NORD logo

INFORM RARE 

Research Network

INFORM RARE is a Canadian research network comprised of patients, family members, representatives from patient organizations, health care providers, policymakers, methodologists, and ethicists. The goal of INFORM RARE is to evaluate new and existing therapies and make recommendations to improve care for children with rare genetic diseases.

 

Children’s Hospital of Eastern Ontario Research (CHEO RI) 

Academic Institution

The CHEO RI is the academic institution responsible for the research oversight of the Registry. This involves data stewardship, research ethics compliance, and legal obligations. Registry staff are also based at the CHEO RI.

 

National Organization for Rare Disorders (NORD®

Registry Platform

The National Organization for Rare Disorders (NORD®) is the first and leading national patient organization representing all individuals and families affected by rare diseases in the United States. NORD is dedicated to improving the health and well-being of people with rare diseases by driving advances in care, research, and policy. To achieve this goal, NORD created its IAMRARE® natural history patient registry program, an easy-to-use system that allows patients to inform and shape medical research and translational science for rare diseases, ultimately advancing treatment development.

Who is responsible for the decision-making of The Canadian MPS Registry?

Decision-making regarding The Canadian MPS Registry will be led by the Canadian Metabolic Patient Registries Steering Committee. The purpose of the committee is to provide overall scientific and patient-oriented leadership and direction for the patient registry. The committee is composed of patients, caregivers, representatives from the patient organizations, health care providers, research methodologists and ethicists.  

Thank you to our funders and partners supporting the Canadian Metabolic Patient Registries!

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