Abstract P5-07-01: BreastCancerTrials.org: Early Evaluation of a Nationwide Clinical Trial Matching Service

Abstract

Background: In 1999, UCSF researchers and patient advocates began a collaboration to design BreastCancerTrials.org (BCT.org), a web-based clinical trial matching service. In May 2005, the UCSF Center of Excellence for Breast Cancer Care (COE) and NCI launched BCT.org as a 2-year pilot with the participation of 13 Bay Area research sites. The pilot showed that breast cancer patients were willing to use an online clinical trial matching service, that they were able to enter their detailed health history onto web-based forms, and that the system's underlying caMATCH technology led to valid matches. In a companion study to evaluate the accuracy of patient-entered data, UCSF researchers found a 93% match rate between the data UCSF patients entered in BCT.org and their corresponding clinic charts. As a result, the COE partnered with a non-profit corporation (Quantum Leap Healthcare Collaborative or QLHC) to launch a nationwide version of BCT.org in October 2008. Development: The COE and QLHC team upgraded BCT.org to include personalized questionnaires for different breast conditions; the ability to use BCT.org anonymously; and the development of more clearly presented trial information. To improve the quality of matching, the team developed TrialCODE, a caMATCH-compatible tool for coding and validating a wide range of eligibility criteria. In July 2009, BCT.org added a Trial Alert Service to inform users when newly listed trials match their history, and SecureCONNECT, a messaging platform that enables users to share their online health history with research sites. COE researchers defined metrics and configured Google Analytics to monitor user traffic and support quality improvement. Results: As of June 2010, the BCT.org trial registry had 331 coded trials, including 213 for treatment, 63 for psychosocial/support, and 55 distributed among diagnosis/screening, prevention, and other categories. The treatment trials were evenly divided between early and advanced disease and included additional trials for individuals with DCIS. In the 18 months between Jan. 2009 and June 2010, BCT.org received 25,206 visits with traffic increasing by 36% in the first 6 months of 2010 compared to the same period in 2009. Since its launch in July 2009, the Trial Alert Service (TAS) enrolled over 1,400 subscribers. As a result, the number of returning users increased from 1,335 to 4,007 in the 6-month period leading up to its launch, compared to the 6-month period after launch. Fifty research sites have registered to use SecureCONNECT and, with patient consent, can securely view BCT. org patient health histories. During the 18 month evaluation period, 3,563 BCT.org users started a health history with 2,206 (62%) completing it and matching to trials; among the users who matched to trials, 920 users (42%) clicked through to view a list of participating research sites. Conclusion: Thousands of patients have adopted BCT.org and use it to monitor trial opportunities. The registry of breast cancer trials is diverse and growing. The COE and QLHC are working to increase participation in SecureCONNECT and evaluate its impact on the efficiency of trial screening and enrollment. Citation Information: Cancer Res 2010;70(24 Suppl):Abstract nr P5-07-01.

Adoption, Acceptability, and Accuracy of an Online Clinical Trial Matching Website for Breast Cancer

“…Although trials are still entered by BreastCancerTrials.org staff, the trial coding process is now more efficient. The nationwide service launched in October 2008 [ 27 ] and currently lists over 500 trials. Patients who wish to use this or other clinical trial matching websites should keep copies of their medical records so that they can enter a profile that will facilitate their gaining access to appropriate opportunities to participate in research studies.…”