The RDCRN-VCRC Patient Contact Registry is an online method by which patients with vasculitis can register themselves with the Vasculitis Clinical Research Consortium (VCRC) in order to be contacted in the future about clinical research opportunities and updates on the progress of the VCRC research projects. Participants in the Registry receive monthly informational newsletters. The registry was launched in 2005 to address a major objective of the Rare Disease Clinical Research Network (RDCRN) to directly engage patients and their advocates in clinical research and to establish infrastructure to make meaningful large-scale studies possible in rare diseases. The Patient Contact Registry is the largest and fastest growing research infrastructure within the VCRC and is the largest such registry within the RDCRN. At present >3,700 subjects with vasculitis (and growing) have enrolled in the Registry, representing all 50 states in the US and an expanding international presence. Three research studies have been successfully completed through the Registry leading to publications of study results in high-profile journals! The aims of this project are to maintain and expand recruitment of patients with vasculitis in the VCRC Patient Contact Registry;to perform online-based research on subjects with different forms of vasculitis, including projects related to social science, comparative effectiveness research and patient-reported outcomes;and to promote patient education and awareness about clinical research in vasculitis. Through partnership with patient advocacy groups in vasculitis, recruitment of new participants remains strong. A series of new proposed projects underscore the importance of the registry to conduct meaningful and innovative research in vasculitis, including an exciting new project to establish a Vasculitis Pregnancy Registry (V-PREG) to learn about the experiences of women with vasculitis who become pregnant. The VCRC Patient Contact Registry provides exciting opportunities to engage patients with vasculitis from all over the world in research studies and educational programs. The VCRC is at the forefront of using the internet to directly work with patients with these rare diseases.

Public Health Relevance

The VCRC Patient Contact Registry is a novel and efficient way to reach patients with rare diseases. Connecting with patients online is an important way to engage patients with vasculitis who may have no other access to participate in research. Through online clinical research studies, patient education, and promotion of awareness about vasculitis, the VCRC Patient Contact Registry fulfills the mission of the RDCRN.

Agency
National Institute of Health (NIH)
Institute
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Type
Specialized Center--Cooperative Agreements (U54)
Project #
2U54AR057319-12
Application #
8909306
Study Section
Special Emphasis Panel (ZTR1-CI-8 (01))
Program Officer
Wang, Yan Z
Project Start
2014-09-01
Project End
2019-08-31
Budget Start
2014-09-01
Budget End
2015-08-31
Support Year
12
Fiscal Year
2014
Total Cost
$79,618
Indirect Cost
$12,221
Name
University of Pennsylvania
Department
Type
DUNS #
042250712
City
Philadelphia
State
PA
Country
United States
Zip Code
19104
Bingham 3rd, Clifton O; Bartlett, Susan J; Merkel, Peter A et al. (2016) Using patient-reported outcomes and PROMIS in research and clinical applications: experiences from the PCORI pilot projects. Qual Life Res 25:2109-16
Kermani, Tanaz A; Cuthbertson, David; Carette, Simon et al. (2016) The Birmingham Vasculitis Activity Score as a Measure of Disease Activity in Patients with Giant Cell Arteritis. J Rheumatol 43:1078-84
Sy, Alice; Khalidi, Nader; Dehghan, Natasha et al. (2016) Vasculitis in patients with inflammatory bowel diseases: A study of 32 patients and systematic review of the literature. Semin Arthritis Rheum 45:475-82
Merkel, Peter A; Manion, Michele; Gopal-Srivastava, Rashmi et al. (2016) The partnership of patient advocacy groups and clinical investigators in the rare diseases clinical research network. Orphanet J Rare Dis 11:66
Tamura, Roy N; Krischer, Jeffrey P; Pagnoux, Christian et al. (2016) A small n sequential multiple assignment randomized trial design for use in rare disease research. Contemp Clin Trials 46:48-51
Pagnoux, C; Carette, S; Khalidi, N A et al. (2015) Comparability of patients with ANCA-associated vasculitis enrolled in clinical trials or in observational cohorts. Clin Exp Rheumatol 33:S-77-83
Kermani, Tanaz A; Warrington, Kenneth J; Cuthbertson, David et al. (2015) Disease Relapses among Patients with Giant Cell Arteritis: A Prospective, Longitudinal Cohort Study. J Rheumatol 42:1213-7
Hatemi, Gulen; Ozguler, Yesim; Direskeneli, Haner et al. (2015) Current Status, Goals, and Research Agenda for Outcome Measures Development in Behçet Syndrome: Report from OMERACT 2014. J Rheumatol 42:2436-41
Aydin, Sibel Zehra; Direskeneli, Haner; Sreih, Antoine et al. (2015) Update on Outcome Measure Development for Large Vessel Vasculitis: Report from OMERACT 12. J Rheumatol 42:2465-9
Dejaco, Christian; Oppl, Bastian; Monach, Paul et al. (2015) Serum biomarkers in patients with relapsing eosinophilic granulomatosis with polyangiitis (Churg-Strauss). PLoS One 10:e0121737

Showing the most recent 10 out of 59 publications