The Cost of Research: A Survey of Participating Sites in a Nationwide Registry

Jenna L. Tress; David D. Sherry

doi:10.3899/jrheum.141122

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Table 1.

Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry survey.

1.	What is your role on the study? Principal investigator Sub-investigator Clinic nurse Research coordinator Other (please specify)
2.	How many patients have you enrolled?
3.	How many patients do you enroll, on average, in a week?
4.	What is the hourly salary of the person(s) who enroll patients into the study?
5.	How much time, on average, does it take to enroll a patient into the study (include screening time, recruitment, consent, data abstraction, and data entry)?
6.	Who completes your CRFs? Attending physician Fellow/Resident Clinic Nurse (if separate from your research person) Study Coordinator/Nurse
7.	Are there any diagnoses you tend to avoid for enrollment into the registry, for any reason? Yes No
8.	If yes, what diseases? (select all that apply) SLE MCTD Systemic sclerosis JDMS Localized scleroderma (morphea) JIA Vasculitis Sarcoid Fibromyalgia Primary Sjögren Auto Inflammatory disease Idiopathic Uveitis
9.	If yes, please check reasons (more than one may apply) Too time consuming to review chart Too time consuming to complete case report form Not interested in collecting data on patients with a particular diagnosis even though it qualifies Do not see many kids with this diagnosis even though it qualifies Other (please specify)
10.	Of eligible subjects, what would you estimate is the percentage of subjects you’ve approached for participation in the registry?
11.	Of eligible subjects, what would you estimate is the percentage of subjects you’ve enrolled for participation in the registry?
12.	Have you used your own research funds or divisional money to supplement the cost of completing this research?

CRF: case report forms; SLE: systemic lupus erythematosus; MCTD: mixed connective tissue disease; JDMS: juvenile dermatomyositis; JIA: juvenile idiopathic arthritis.

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Table 2.
Comparison of common rheumatic diseases between the CARRA registry and those reported from a 3-year multiclinic survey of all new patients seen⁹.
Diagnosis CARRA Enrollees (%) Rheumatology Clinic Population Enrollees (%) p^*
JIA 6503 (78) 2761 (78) 0.88
SLE 998 (12) 332 (9) < 0.001
Dermatomyositis 630 (8) 164 (4) < 0.00001
Fibromyalgia 201 (2) 268 (8) < 0.00001

↵* Chi-squared test. CARRA: Childhood Arthritis and Rheumatology Research Alliance; JIA: juvenile idiopathic arthritis (composite of juvenile rheumatoid arthritis, seronegative enthesopathy arthropathy, enthesitis, and spondyloarthropathy from Bowyer and Roettcher⁹); SLE: systemic lupus erythematosus.