What does Rheum4U Offer Researchers?
Since 2016, Rheum4U has collected data on more than 1,000 participants with inflammatory arthritis over more than 5,000 consults.
For Researchers
Patient-reported outcomes
At each clinic visit, Rheum4U participants complete a series of questionnaires, including:
- Demographics (date of birth, sex, postal code, ethnicity, income, marital status, education)
- Clinical Health Assessment Questionnaire (ClinHAQ)
- Health History
- Bath Ankylosing Spondylitis Disease Activity Index (BASDAI)
- EQ-5D-5L
- WPAI (Work Productivity and Activity Impairment)
- Clinic satisfaction survey
Review the full list of data assets available in Rheum4U:
Medications
Rheum4U collects medication history of:
- biologic and small molecules
- DMARDs
- immunosuppressants
- corticosteroids
- NSAIDs
- joint and intramuscular injections
- blood products
Joint assessment and disease activity
For each visit, Rheum4U collects physician-assessed swollen/tender joint counts as well as laboratory markers (CRP, ESR).
Disease activity scores are automatically calculated by the Rheum4U platform:
- DAS28CRP
- DAS28ESR
- CDAI
- BASDAI
- BASMI
- HAQ
Disease progression and linking to administrative datasets
Rheum4U collects patient-reported outcome measures, physician assessment, disease activity measures and medication use over time.
Researchers can link unique variables collected in Rheum4U to administrative datasets within Alberta Health Services to gain further insights into health outcomes and health services use.
How does Rheum4U Support Researchers?
The Rheum4U Precision Health Registry supports research and quality improvement initiatives. The Rheum4U Research Operations Committee will consider the following requests:
Rheum4U will respond to general inquires such as patient cohort counts, data elements available, and retrospective availability. We support inquires relating to grant submissions, LOIs and collaboration requests.
Rheum4U can provide letters in support of research projects that may wish to make use of data available in Rheum4U Precision Health Registry. These letters will outline particulars of the data available in Rheum4U, the Rheum4U Research Operations Committee’s endorsement of the proposed research project, and its willingness to make the requested data available to the research team.
Rheum4U data is available for research and quality improvement projects, given appropriate Research Ethics Board approval and Rheum4U Research Operations Committee endorsement of the proposed research project.
Rheum4U operates under a cost-recovery model, with concessions to students and new investigators.
See the list of data assets available here:
Rheum4U supports data collection needs of research and quality improvement projects, given appropriate Research Ethics Board approval and the endorsment of the Rheum4U Research Operations Committee.
Rheum4U operates under a cost-recovery model, with concessions to students and new investigators.
The Rheum4U team can provide expertise to researchers by developing research protocols and Research Ethics Board applications on a cost recovery basis.
Rheum4U can support recruitment and consent-to-contact for research studies by accessing its cohort of more than 1,000 participants.
Opportunities for students
Rheum4U welcomes research requests by students and trainees. Review the list of data elements available and complete the Rheum4U Research Request Form to initiate your project.
Rheum4U data request process
Submit a Rheum4U Research Request Form to express interest in accessing Rheum4U data and/or resources. You will be asked to provide research details and specify certain fields, including:
- Project title
- Research objectives, rationale and methodology
- Access to funding (where applicable)
Meet with a Rheum4U research facilitator/coordinator to discuss your request, review available data elements, define inclusion/exclusion criteria.
The research facilitator/coordinator submits the detailed request to the Rheum4U Research Operations Committee, which renders a decision regarding the request.
The following are required before data will be transferred:
- Approval from the appropriate research ethics board
- Approval from Rheum4U Research Operations Committee
- Signed Rheum4U Data Use Conditions document
Rheum4U data is stored and shared using the University of Calgary Secure Computing Platform, approved for use on Level 4 data.
Quick access: Documents and forms
Linked studies
Below are some of the studies that Rheum4U has supported.
| Study | Investigator | Department | Year | Rheum4U Support |
|---|---|---|---|---|
| Pilot testing Online Data Entry by Division of Rheumatology Patients, Clinic Staff, and Physicians | Claire Barber | Rheumatology | August 2016 - April 2017 |
Data collection Recruitment Consented 131 participants from August 2016 – April 2017; collected study data using Rheum4U |
| A Balanced Scorecard Approach for Improving Care in Inflammatory Arthritis (CIHR & SPOR) | Claire Barber | Rheumatology | April 2017 - Sept 2019 |
Data collection Recruitment Recruited participants Apr ’17 – Sep 19; collected study data using Rheum4U |
| The Precision Health Registry for Inflammatory Arthritis: Integrating Data Sources to Understand Disease and Improve Care for Rheumatology Patients in Alberta | Dianne Mosher | Rheumatology | September 2019 - present |
Data collection Recruitment Actively recruiting patients as of September 2019. |
| Optimizing Centralized Intake to Improve Arthritis Care for Albertans (PRIHS) | Deborah Marshall | Community Health Sciences | July 2017 |
Recruitment Contacted 27 participants; invited to complete an online survey |
| The relationship between sub-clinical inflammation and bony damage progression in rheumatoid arthritis (McCaig Institute) | Sarah Manske | Radiology | May 2018 - August 2018 |
Recruitment Recruited 10 participants |
| Usability Testing of Methotrexate Decision Aid – Phase 2 (CIORA) | Glen Hazlewood | Rheumatology | Jun 2018 |
Recruitment Data access Contacted 72 participants; invited to complete an online survey. Provided Rheum4U-collected data on those who completed the online survey |
| Understanding Patient and Physician Choices for Tapering Treatment in Rheumatoid Arthritis (CIHR) | Glen Hazlewood | Rheumatology | Aug 2018 |
Recruitment Recruited 24 participants for focus group participation |
| Development of a Patient-Centered RA Quality of Care Survey and Testing Continuous Reporting of Established RA Quality Measures (U of C Dept of Medicine Clinical Analytics Award) | Claire Barber | Rheumatology | 2021 |
Recruitment Recruited 50 RA patients using Rheum4U |
| Advanced Multi-Modal Imaging to Predict Early Inflammatory Arthritis Progression (ACTUS) | Sarah Manske | Radiology | 2019-present |
Consent to contact Data access Obtaining consent to contact for 39 RA patients within 6 - 12 months of diagnosis with high disease activity or potential for erosions. |
| COVID-19 Vaccination in Patients with Autoimmune Conditions and/or on Immune Suppressing Medications: A Discrete Choice Experiment (CIHR) | Glen Hazlewood | Rheumatology | June 2021-August 2021 |
Recruitment Contacted 100 participants to invite to complete an online survey. 32 participants completed the survey. |
| Patient Acceptance of Bone Marrow Transplant as a Potential Treatment for RA (Arthur JE Child Chair for Rheumatology Outcomes Research) | Deborah Marshall | Community Health Sciences | 2021-present |
Recruitment Recruited 10 participants using Rheum4U for pilot phase; recruiting 100 participants for main study |
| Various (including Clinical Trials) | Aurore Fifi-Mah | Rheumatology | 2014 - November 2019 |
Protocol development Recruitment Provided support with protocol development, ethics application, and participant recruitment. |
| Heterogeneity in Patient Characteristics and Differences in Treatment Across 4 Canadian Rheumatoid Arthritis Cohorts | Claire Barber | Rheumatology | 2020-2021 |
Data Access Provided data on 709 RA participants |
| A Better Match: Transforming rheumatoid arthritis care through tailored follow-up strategies based on disease activity and patient complexity | Claire Barber | Rheumatology | 2022 |
Consent to Contact Recruited 25 participants to study |
| Imaging the effects of sub-clinical inflammation on bone degeneration in rheumatoid arthritis remission | Sarah Manske | Radiology | 2022 |
Consent to Contact Recruiting 100 participants to study |
| Canadian Early Arthritis Cohort (CATCH) | Glen Hazlewood | Rheumatology | 2022 |
Recruitment and data collection Recruiting new participants and collecting data on active participants at Calgary site |
| Patient Perspective in Biosimilar Switching | Deborah Marshall | Community Health Sciences | 2022 |
Recruitment Recruiting 200-300 participants to complete survey |
| Virtual Health Methods in Transition | Nadia Luca and Michelle Jung | Rheumatology | 2022 |
Recruitment and data collection Recruiting 20 participants and conducted interviews |
