Arthritis & Rheumatism, Volume 63,
November 2011 Abstract Supplement

Abstracts of the American College of
Rheumatology/Association of Rheumatology Health Professionals
Annual Scientific Meeting
Chicago, Illinois November 4-9, 2011.


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

Michaud1,  Kaleb, Harp1,  Kimberly, Schumacher1,  Rebecca, Naides2,  Stanley J., Patten2,  William F., Axtell3,  Beth, Plenge4,  Robert M.

National Data Bank for Rheumatic Diseases, Wichita, KS
Quest Diagnostics Nichols Inst, San Juan Capistrano, CA
Arthritis Foundation, Atlanta, GA
Brigham and Women's Hospital, Boston, MA

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.

Methods:

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+.

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)10.69.211.915.9
Non–Hispanic White (%)89.689.885.595.6
Education (years)14.8 (2.4)14.8 (2.3)14.6 (2.9)15.1 (1.8)
Married (%)65.566.660.169.0
Smoker ever (%)42.040.245.646.0
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)

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.

To cite this abstract, please use the following information:
Michaud, Kaleb, Harp, Kimberly, Schumacher, Rebecca, Naides, Stanley J., Patten, William F., Axtell, Beth, et al; Internet-Based Patient Registry and Biospecimen Collection: One Year Experience of the Arthritis Internet Registry. [abstract]. Arthritis Rheum 2011;63 Suppl 10 :1888
DOI:

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