For Researchers

For Researchers

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.   


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: 

Rheum4U Assets

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

Data Assets

A listing of the data assets available to researchers.

Download spreadsheet

Research Request Form

Use this form to request access to Rheum4U services and data.

Download form

Data Use Conditions

An agreement that must be completed before data access is provided. Please contact us for a copy of this form.

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

 


Have questions?

Have questions about how Rheum4U can support your research?

Contact us