Understanding patients’ experiences as partners in research

Aug 24, 2019

Patient engagement in research (PEIR) is a new way of doing health research where patients and members of the public become part of the scientific research team. In this study, researchers want to understand how patients who become involved in research teams deal with and adapt to the challenges they face in their new role. Understanding how and why it…

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Blood proteins linked to lupus will lead to better diagnosing and understanding of the disease

Jun 04, 2019

Lupus or systemic lupus erythematosus (SLE) is a complex and unpredictable disease that can lead to irreversible organ damage. SLE patients have specific proteins in their blood that healthy people do not. This study will determine which of the 10 proteins identified in a group of SLE patients are linked to SLE. This information could represent a new signal for…

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Reducing the Burden of Complications from Inflammatory Diseases

Feb 07, 2019

Due to improved treatments, people with inflammatory diseases of the skin, joint, or bowel are more likely to die from medical complications of the disease than the disease itself. This sub-project of the PRECISION study will examine how common the complications are, and what factors (such as inflammation) increase or decrease the risk of these complications.

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Improving gout care: Shared access to electronic medical records

Feb 07, 2019

Gout is a very painful type of arthritis that results from excess uric acid build-up in the body, leading to repeated inflammation and deformity in the joints. This sub-project of the PRECISION study will examine if shared access to electronic medical records (from rheumatologists, pharmacist, and dieticians) will improve gout care, prevent complications associated with gout, and ultimately improve patient…

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Preventing Complications in an Indigenous Community: Improving Quality of Care

Feb 07, 2019

Indigenous communities have higher occurrences of chronic diseases (including inflammatory diseases) and more difficulty accessing health care services than other populations in Canada. This sub-project of the PRECISION study will evaluate if the use of a nurse case manager in a First Nations community can result in care that is appropriate, respectful, and culturally relevant for those with chronic diseases.

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Is ‘Big Data’ a big deal for healthcare in Canada?

Feb 07, 2019

Most people who did this study’s online survey supported using datasets from our public health care system for health research, if personal information was removed. It was seen as important to studying long-term outcomes in large numbers of people.

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Risk of Retinal Toxicity in Patients with Systemic Lupus Erythematosus and Rheumatoid Arthritis on Long-term Hydroxychloroquine Therapy

Feb 06, 2019

The drug hydroxychloroquine (HCQ) is commonly used to treat systemic lupus erythematosus and rheumatoid arthritis, as it reduces the severity of the disease, lessens medical complications, all which contribute to a longer life. However, a serious long-term side-effect is eye damage that may cause vision loss.

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Testing models of care for inflammatory arthritis

Dec 21, 2017

With the growing demands due to the insufficient number of rheumatologists – specialist physicians who care for patients with inflammatory arthritis (IA) – the “Model of Care for Inflammatory Arthritis” was developed to promote best practices for early diagnosis and treatment of IA. We developed measures to evaluate the model’s ability to provide access and timely treatment for IA patients.

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The MyLupusGuide: An empowering eHealth tool to support self-management of lupus

Dec 20, 2017

MyLupusGuide has been developed to provide reliable and easily accessible information, support, and other tools to help people manage their lupus. This study will investigate the use of MyLupusGuide and its effectiveness in improving self-management and better health for those with the disease.

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Measuring the risks and costs of steroid use in individuals with systemic lupus erythematosus

Dec 11, 2017

Steroids are an effective, low-cost treatment for systemic lupus erythematosus (SLE), but may also lead to long-term health problems. This study is investigating the severity of the risk across all dosage levels of steroids to better understand what constitutes a “safe” dose, and the medical or surgical costs for managing long-term health problems.

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Improving quality of arthritis care for Indigenous populations

Jul 04, 2017

Arthritis, particularly inflammatory arthritis, is the most common chronic disease in Indigenous populations. This research aims to find solutions to the inequalities in inflammatory arthritis care and outcomes in Canada’s Indigenous populations. Preferences for care and treatment will be determined, and tools will be developed to assist them and their health care providers to agree on treatment choices and expectations.

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Measuring and reducing the financial costs of systemic lupus erythematosus

Mar 17, 2017

Little is known about the economic challenges and productivity loss experienced by systemic lupus erythematosus (SLE) patients. Previous research was limited and estimated only indirect financial costs. This study will identify and estimate longer-term direct and indirect costs, reflective of the long-lasting nature of SLE.

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