1888 - Internet-Based Patient Registry and Biospecimen Collection: One Year Experience of the Arthritis Internet Registry

Tuesday, November 8, 2011: 9:00 AM-6:00 PM
Hall F2 - Poster Hall (McCormick Place West)
Kaleb Michaud1, Kimberly Harp1, Rebecca Schumacher1, Stanley J. Naides2, William F. Patten2, Beth Axtell3 and Robert M. Plenge4, 1National Data Bank for Rheumatic Diseases, Wichita, KS, 2Quest Diagnostics Nichols Inst, San Juan Capistrano, CA, 3Arthritis Foundation, Atlanta, GA, 4Brigham and Women's Hospital, Boston, MA
Presentation Number: 1888

Internet-Based Patient Registry and Biospecimen Collection: One Year Experience of the Arthritis Internet Registry

Background/Purpose: Observational cohorts that follow rheumatic disease patients longitudinally and obtain biospecimens can be extremely expensive and laborious to initiate. We sought to determine the feasibility of creating the Arthritis Internet Registry (AIR), an online-based cohort by combining the patient-study infrastructure of the National Data Bank for Rheumatic Diseases, the nation-wide availability of Quest Diagnostics Incorporated (QD) blood collection sites, and the patient outreach of the Arthritis Foundation.

Method: Starting in July 2010, a website for AIR enrollment was created (http://www.arthritis-research.org/) and online advertising began on the Arthritis Foundation website asking visitors with arthritis to participate. After an initial consent, participants completed a questionnaire about their diagnoses and medical history to become enrolled. We obtained consent to contact their physicians about their diagnoses. Once the diagnoses were confirmed, we then requested consent to collect blood samples and mailed anonymous collection kits that they took to a nearby QD site for their blood draw. Samples were collected and analyzed by QD and stored at QD and academic sites.

Results: By June 2011, the AIR enrollment site had 3,331 unique visitors of which 923 patients from all 50 US states enrolled with 67% reporting rheumatoid arthritis (RA), 21% osteoarthritis (OA) and 12% were other rheumatic diseases (4% psoriatic arthritis, 2% lupus, 2% fibromyalgia, etc). After physician contact about diagnosis for 282 patients, 97.4% of participants reporting RA were confirmed and 1.8% had other inflammatory rheumatic diseases. There was no statistical association between RA screening questions and physician-confirmed diagnosis. Participants were primarily female (89%), younger (52 years), Caucasian (90%), married (66%), college educated (86%) and developed their condition almost 14 years prior. Overall pain, fatigue and clinical measures were moderate to high as shown in the Table. Blood specimens were collected for 163 patients, 125 were RA patients of which 51% were CCP+ and 50% RF+; of the 38 non-RA patients 5% were CCP+ and 8% RF+.

Conclusion: Through the close cooperation of for-profit and non-profit organizations, AIR has proven that a large study of rheumatic disease patients with biospecimens can be created and conducted online.  Continued recruitment, partnerships and patient-followup will be needed to determine the long-term research applications.

 

Table: Mean (SD) characteristics of 923 AIR participants at enrollment by diagnosis

ALL (N=923)

RA (N=617)

OA (N=193)

Other (N=113)

Age (years)

51.7 (13.4)

50.1 (13.5)

57.5 (12.5)

50.3 (12.1)

Sex (% male)

10.6

9.2

11.9

15.9

Non-Hispanic White (%)

89.6

89.8

85.5

95.6

Education (years)

14.8 (2.4)

14.8 (2.3)

14.6 (2.9)

15.1 (1.8)

Married (%)

65.5

66.6

60.1

69.0

Smoker ever (%)

42.0

40.2

45.6

46.0

Disease duration (years)

13.7 (12.6)

13.5 (12.8)

14.5 (12.4)

13.2 (11.9)

HAQ-II (0-3)

1.01 (0.62)

0.99 (0.63)

1.07 (0.59)

1.07 (0.58)

Pain (0-10)

5.2 (3.0)

4.9 (3.0)

5.8 (2.8)

5.4 (2.8)

Patient global severity (0-10)

4.3 (2.6)

4.2 (2.6)

4.8 (2.7)

4.4 (2.5)

Patient activity score-II (0-10)

4.3 (2.3)

4.1 (2.3)

4.7 (2.2)

4.4 (2.1)

Fatigue (0-10)

5.8 (3.1)

5.8 (3.1)

5.6 (3.1)

6.4 (2.9)

GI severity (0-10)

2.9 (3.0)

2.9 (3.0)

2.7 (3.0)

3.4 (3.1)

Sleep disturbance (0-10)

5.2 (3.3)

5.2 (3.4)

5.3 (3.3)

5.4 (3.2)

 


Keywords: biomarkers, longitudinal studies and patient questionnaires

Disclosure: K. Michaud, None; K. Harp, None; R. Schumacher, None; S. J. Naides, Quest Diagnostics Incorporated, 3 ; W. F. Patten, Quest Diagnostics Incorporated, 3 ; B. Axtell, None; R. M. Plenge, None.