Research on rare diseases
What we do for research
Research on rare diseases is essential to improve the quality of life of those who are affected and their families. There is now more interest by Canadian researchers and governments to advance knowledge about rare diseases and to develop treatments. These diseases being rare, sometimes research is only done in other countries or through international collaboration.
We find it important to:
- Inform people affected by a rare disease, parents of affected children or other caregivers about the state of research on their rare disease.
- Inform patients/caregivers about opportunities to participate in research projects and clinical trials
- Inform patients/caregivers about surveys or patient registries conducted by patient organizations.
- Help researchers recruit participants for their research projects and clinical trials.
- Inform healthcare professionals about ongoing research projects and clinical trials.
- Contact researchers for certain specific diseases if associations or patients/caregivers want to advance research on their disease.
You want to know all about research on your rare disease?
Contact us. We will search various sources of information and share with you the research being done by researchers in Canada and elsewhere. We can also answer any questions you may have to help you better understand the research projects and clinical trials.
Participate in research on your rare disease today
Register yourself, your child or a loved one in a REGISTRY
Some rare disease associations have taken charge of research on their disease. They themselves conduct surveys or studies and set up registries to collect data. You can register yourself in these registries from anywhere in the world. This is a way for you to advance research. The data collected is used by associations or by interested researchers. By registering, you may also be contacted in the future for academic research projects or clinical trials.
There are registries for specific rare diseases, for all rare diseases (a registry you can join regardless of your disease), and even for undiagnosed rare diseases.
The RQMO has created a directory of such rare disease registries. We have brought together in one place the rare disease registries in which patients or caregivers can register themselves or request to be registered.
If you need help participating in one of these registries or can’t find one for your condition, contact us.
SIGN UP FOR RESEARCH!
There are also registries that are managed by clinicians. See this inventory of registries made by the Canadian Drug Agency in 2024. If there is one for your disease, ask your doctor if you can participate.
Learn about ongoing clinical trials
- Clinical trials worldwide (including Canada): gov
- Register for a clinical trial in Canada: VIPeR
- Orphanet: research projects and clinical trials
- Search for clinical trials in Canada
- Public clinical trials registry – Clinical Research Quebec (you can register)
- Clinical Trials in the European Union – EMA (euclinicaltrials.eu)
- International Clinical Trials Registry Platform
Learn about patient engagement in research
- Canadian Institutes of Health Research – Institute of Genetics: Patient partnership
- Patient and Community Engagement Research (PaCER) – University of Calgary:
training patient and community members to bring patient-informed health research evidence into health care planning, practice and policy.
Do you want to learn more about research in the field of rare diseases?
- EURORDIS offers in-person training for patient advocates every year in June. They also offer free on-line training. See here: Open Academy School on Medicines Research & Development.
- Also see these courses offered in several languages, including French: https://openacademy.eurordis.org/all-courses/
- More information about rare disease research by Eurordis
- RareEdu program by the National Organization for Rare Disorders (USA)
- International Rare Diseases Research Consortium (IRDiRC)
For information on initiatives in Canada see our page “Rare diseases in Canada”
