Rare Disease Research

WHAT WE DO FOR RESEARCH

One of the objects of the RQMO’s mission is to promote research on rare diseases and topromote exchanges between researchers and people affected or their caregivers. Here’s how we accomplish this part of our mission:

We inform and answer questions from people affected by a rare disease (or from parents and caregivers) regarding the state of research on their disease.
We help recruit people with the condition or their caregivers to participate in academic research projects. We publish calls on our platforms for recruiting research participants.
We contact researchers for certain specific diseases if associations or patients/caregivers want to advance research on their disease.
We participate in some research projects as consultants or partner associations.
We inform researchers about grants offered by rare disease organizations.
We write letters of support for researchers applying for grants related to rare diseases.
We disseminate information on our platforms on rare disease research, particularly that carried out in Quebec.
We have also initiated research projects for patient groups.
Finally, we have compiled a directory of registries for rare diseases (see below).

RESEARCH ON RARE DISEASES

For many rare diseases there is little or no research and, compared to other countries, there is less in Canada. Research must be international given the small number of people affected.

View a brochure that explains the difficulties related to research into rare diseases.

Listen to the webinar: How you can participate in research on your rare disease (or an undiagnosed disease) (in French)

YOU WANT TO KNOW WHERE RESEARCH ON YOUR RARE DISEASE IS AT ?

Contact us. We will search for you and give you information on ongoing research projects by researchers from here and elsewhere.

To find a clinical trial

The RQMO is a partner of Research Trials in Quebec and ot its personalized support service to help patients find and participate in a clinical trial. Consult their website.

Clinical Trial Databases:

Quebec’s Public Clinical Trials Database (recherchecliniquequebec.com)
Register for a clinical trial in Canada: VIPeR
Looking for a clinical trial in Canada
Clinical trials worldwide (including Canada): ClinicalTrials.gov
Clinical Trials in the European Union – EMA (euclinicaltrials.eu)
Orphanet: search for a clinical trial

PARTICIPATE IN RESEARCH ON YOUR RARE DISEASE TODAY

You don’t have to wait for researchers to ask you to participate in a research project.

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 registers for:

Specific diseases (a registry for a specific rare disease)
Specific genes
All rare diseases (a registry you can join regardless of your disease)
And even for undiagnosed rare diseases

See our directory of registries below. If you need help paraticipating inone of these registries or can’t find one for your condition, contact us.

OUR REGISTRY OF INTERNATIONAL REGISTRIES

Register with a specific registry for your rare (or undiagnosed) disease. The RQMO has created a directory of existing 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. There are also some for people without a diagnosis.

THE RQMO - PARTNER IN RESEARCH PROJECTS

Montreal In Vivo – Life sciences and health technologies
Quebec Rare Disease Research Network (RARE-Qc)
Genomics Research Project on Ehlers-Danlos syndrome – McGill University
“Réseau ensemble” project – University of Sherbrooke