Table 1.

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

1.What is your role on the study?

  1. Principal investigator

  2. Sub-investigator

  3. Clinic nurse

  4. Research coordinator

  5. 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?

  1. Attending physician

  2. Fellow/Resident

  3. Clinic Nurse (if separate from your research person)

  4. Study Coordinator/Nurse

7.Are there any diagnoses you tend to avoid for enrollment into the registry, for any reason?

  1. Yes

  2. No

8.If yes, what diseases? (select all that apply)

  1. SLE

  2. MCTD

  3. Systemic sclerosis

  4. JDMS

  5. Localized scleroderma (morphea)

  6. JIA

  7. Vasculitis

  8. Sarcoid

  9. Fibromyalgia

  10. Primary Sjögren

  11. Auto Inflammatory disease

  12. Idiopathic Uveitis

9.If yes, please check reasons (more than one may apply)

  1. Too time consuming to review chart

  2. Too time consuming to complete case report form

  3. Not interested in collecting data on patients with a particular diagnosis even though it qualifies

  4. Do not see many kids with this diagnosis even though it qualifies

  5. 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.