Great news for Canadian autoinflammatory patients of all ages: Canada is getting its own registry for systemic autoinflammatory diseases!

Systemic autoinflammatory diseases (SAID) currently include over 50 rare conditions that are caused by uncontrolled systemic and organ-specific inflammation. These disorders usually start in childhood and can have a devastating long-term impact on patients if not treated. Over the last 20 years, there has been more awareness of SAID as researchers are discovering new conditions. Because doctors are still learning about these new conditions and SAID can be hard to diagnose, we can’t say for sure how many Canadians are affected by SAID. Depending on the condition, it’s estimated that between 1 in 1,000 to 1 in 1,000,000 Canadians are affected by a SAID. 

A registry is a database of patients that includes important information like their diagnosis, past and current treatments/medications, and demographic information, like their age, ethnic background, and gender/sex.

Patient registries are very important for research on diagnosis, disease cause, and treatment, especially with rare diseases like SAID where not a lot of people have a diagnosis. 

Although some pediatric rheumatology centers have created local registries, there isn’t a Canada-wide registry for patients with SAID, and currently, these centers can’t share data with each other for important research. This lack of a comprehensive registry makes it harder to improve clinical care, educate healthcare providers, and advance research for SAID in Canada.

To address the current gaps in data collection and sharing, Canadian clinicians and researchers, together with patient partner groups,  formed the CAN-SAID research group during the 2023 International Society of Systemic Autoinflammatory Diseases (ISSAID) Congress in Toronto. A group of CAN-SAID members have now received funding from the Canada Drug Agency (CDA) to develop a process to collect valuable clinical information on SAID patients across the country, to facilitate new research.  

Dr. Kelly Brown, PhD, one of the initiative’s leaders, emphasizes the significance of this project for patients in Canada: “This is a unique opportunity to build a national registry with federal support. It shows a strong commitment to advancing care for those with autoinflammatory diseases.”

The project will begin by integrating data from existing local registries into one virtual database. Once this is complete, the plan is to expand the registry collection to other adult and pediatric centers across Canada.  The CAN-SAID registry will be tailored to reflect the diverse population of Canada and how this diversity influences the types of SAID seen in our communities.

“Our ultimate goal is to ensure that every child and adult with an autoinflammatory disease is counted,” says Dr. Lori Tucker, MD, another lead of the CAN-SAID project. “These are the patients who are often overlooked, and we want to make sure they’re included.”

As the only charity in Canada 100% committed to the childhood rheumatic disease community, including a growing number of SAID patients and their families, we look forward to playing an important role in ensuring the success of the CAN-SAID initiative. The team at Cassie + Friends will help make sure patients know about the registry, and will encourage families and patients to participate by providing information about the project and updating the community on what researchers are learning, and how it will transform patient care.  

Lori Tucker and Kelly Brown (University of British Columbia and BC Children’s Hospital, Vancouver)

Linda Hiraki, Dilan Dissanayake, and Ron Laxer (University of Toronto and The Hospital for Sick Children, Toronto)

Liane Heale (McMaster University and McMaster Children’s Hospital, Hamilton)

Maryam Piram (University of Montreal and Centre Hospitalier Universitaire Sainte-Justine, Montreal)

Stephanie Ducharme (University of Montreal and Hôpital du Sacré-Coeur, Montreal)

Sarah Hansen (University of British Columbia and St. Paul’s Hospital, Vancouver)

Ian Steadman (York University, Toronto)

Marinka Twilt and Ashish Marwaha (University of Calgary and Alberta Children’s Hospital, Calgary)