The case for proactive, collaborative data-updating in a statewide cancer clinical trial matching service

2007 ◽  
Vol 25 (18_suppl) ◽  
pp. 6570-6570
Author(s):  
K. Moffitt ◽  
R. D. Marsh ◽  
C. Hudson
Keyword(s):  
Clinical Trial ◽  
The United States ◽  
Cancer Clinical Trial ◽  
Trial Participation ◽  
Web Based ◽  
Trial Site ◽  
Monthly Data ◽  
Data Verification ◽  
Grass Roots ◽  
Data Updating

6570 Background Florida has the second highest cancer incidence of any state in the United States. To address Florida's growing cancer burden and the need for increased clinical trial participation, Florida Cancer Trials (FCT) launched a web-based and phone-based Clinical Trial Matching Service for the State of Florida on November 1, 2004 (operated by EmergingMed). After 2 years of monthly outreach to 96 trial sites, the FCT wanted to assess the outcome and ongoing need for intensive, grass-roots data verification activities in light of other publicly available cancer clinical trial databases. Methods On 10/23/06, FCT staff extracted all trials containing at least one Florida trial site from the PDQ and ClinicalTrials.gov (CT.gov) database. The same extraction was produced from the TrialCheck database on 11/10/06. Each database was compared to the list of active cancer clinical trials in the FCT/EmergingMed database on the same day. Every trial-site listed in the PDQ/CT.gov database, but missing from the FCT/EmergingMed database, was contacted by FCT staff to confirm the accuracy of each trial/site combination. Results PDQ/CT.gov contained 547 trials listed with Florida trial sites on 10/23/06 (the FCT/EmergingMed database contained 526 trials on the same day). On 11/10/06, the TrialCheck database listed 528 trials with Florida trial sites (the FCT/EmergingMed database contained 513 verified trials on the same day). The PDQ/CT.gov database was missing 25% of Florida's open trials, while the TrialCheck database was missing 36% of Florida's open trials. Moreover, 19% of PDQ/CT.gov's trial listings and 25% of TrialCheck's listings for Florida were erroneous. Conclusions With 25%–36% of Florida's trials missing from public databases, and 19%–25% of their current listings being false listings for Florida, the FCT continues to conclude that a grass-roots, monthly data verification schedule is necessary to maintain a cancer clinical trial database that is suitable for use in referring patients and physicians to Florida's cancer clinical trial sites. No significant financial relationships to disclose.

Cancer clinical trial accessibility in the United States: An analysis of travel distance.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 6540-6540
Author(s):  
Asma Latif ◽  
Kristian D Stensland ◽  
Ryan Hendricks ◽  
Erin L. Moshier ◽  
James H. Godbold ◽  
...  
Keyword(s):  
United States ◽  
Clinical Trial ◽  
The United States ◽  
Travel Distance ◽  
Cancer Clinical Trial ◽  
Phase Iii ◽  
Tumor Type ◽  
Trial Site ◽  
Cancer Trials ◽  
Zip Code

6540 Background: Accessibility of cancer clinical trials has been cited as a barrier to participation. While there are several dimensions to accessibility, travel distance may represent an important measure with potential socio-demographic implications. We sought to identify the driving distance from each ZIP-code in the United States to the nearest clinical trial site for four common solid tumors, and correlate ZIP-code level demographics with travel distance. Methods: The ClinicalTrials.gov database was queried on September 12, 2012 to identify all open, actively recruiting phase II and phase III therapeutic interventional trials in first-line metastatic disease for the four most common solid tumor types in the United States (prostate, breast, lung, and colorectal). Driving distance from each ZIP-code in the continental United States to the nearest trial site for each tumor type was calculated. Trial sites located within the ZIP-code were set at a travel distance of 0 miles. ZIP-code level demographics, derived from the 2010 Census, were correlated with driving distance. Results: We identified 42 prostate cancer trials with 958 sites, 81 breast cancer trials with 1,345 sites, 83 lung cancer trials with 2,249 sites, and 32 colorectal cancer trials with 566 sites which met inclusion criteria. The travel distances for each tumor type are shown in the Table. Analyses correlating driving distance with ZIP-code level demographics are ongoing. Conclusions: Substantial heterogeneity exists regarding accessibility of cancer trials in the United States as measured by driving distance. The optimal geographic distribution of trials, the burden imposed by travel, and the degree to which travel distance contributes to poor cancer clinical trial enrollment all warrant further investigation. [Table: see text]

scholarly journals Insurance denials for cancer clinical trial participation after the Affordable Care Act mandate

Cancer ◽  
2017 ◽  
Vol 123 (15) ◽  
pp. 2893-2900 ◽  
Author(s):  
Christine B. Mackay ◽  
Kaitlyn R. Antonelli ◽  
Suanna S. Bruinooge ◽  
Jarron M. Saint Onge ◽  
Shellie D. Ellis
Keyword(s):  
Clinical Trial ◽  
Affordable Care Act ◽  
Cancer Clinical Trial ◽  
Trial Participation ◽  
Clinical Trial Participation ◽  
The Affordable Care Act

Patient perception of gynecologic cancer clinical trial participation in the Deep South

2020 ◽  
Vol 159 ◽  
pp. 293-294
Author(s):  
N.L. Rezvani ◽  
O.E. Gilbert ◽  
C. Smith ◽  
A.G. Chapple ◽  
N. Nair ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Gynecologic Cancer ◽  
Patient Perception ◽  
Cancer Clinical Trial ◽  
Trial Participation ◽  
Deep South ◽  
Clinical Trial Participation

scholarly journals Addressing the Financial Burden of Cancer Clinical Trial Participation: Longitudinal Effects of an Equity Intervention

2019 ◽  
Vol 24 (8) ◽  
pp. 1048-1055 ◽  
Author(s):  
Ryan D. Nipp ◽  
Hang Lee ◽  
Emily Gorton ◽  
Morgan Lichtenstein ◽  
Salome Kuchukhidze ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Financial Burden ◽  
Cancer Clinical Trial ◽  
Trial Participation ◽  
Clinical Trial Participation ◽  
Longitudinal Effects ◽  
Financial Burden Of Cancer

P003 INFLAMMATORY BOWEL DISEASE PATIENTS’ PERSPECTIVES OF CLINICAL TRIALS

2020 ◽  
Vol 26 (Supplement_1) ◽  
pp. S53-S53
Author(s):  
David Rubin ◽  
Laurent Peyrin-Biroulet ◽  
Walter Reinisch ◽  
Swati Tole ◽  
Laura Sullivan ◽  
...  
Keyword(s):  
Health Care ◽  
Clinical Trial ◽  
Clinical Trials ◽  
Health Care Providers ◽  
Online Survey ◽  
The United States ◽  
Trial Participation ◽  
Pharmaceutical Manufacturer ◽  
Care Providers ◽  
Inflammatory Bowel

Abstract Background Despite recent progress in treatment for inflammatory bowel diseases (IBD), there is a need for therapies with long-term efficacy and improved safety. Clinical trials in IBD face challenges with patient recruitment because of study designs, competitive or overlapping trials, and a limited number of eligible patients. We sought to better understand patients’ motivations, awareness of, and experience with IBD clinical trials. Methods We conducted an international survey of adult patients with IBD consisting of 2 components. The quantitative component, a 15-minute online survey, was completed by all patients. A qualitative component, a 30-minute telephone interview, was completed by a subset of patients from the United States (US). All percentages indicate results from the online survey. Results 226 patients (mean age, 41.9 y) completed the online survey. Survey respondents included patients with ulcerative colitis (52%) and Crohn’s disease (48%) from the US (n=100, 21 of whom underwent a phone interview), Brazil (n=26), Canada (n=25), France (n=25), Germany (n=25), and Spain (n=25). Ninety-six percent of respondents reported at least a basic understanding of clinical trials, and 34 (15%) were current or past clinical trial participants. Patients reported learning about trials through 1 or more sources (could select as many as applied): health care providers (42%), pharmaceutical manufacturer websites (31%), social media (30%), online support groups (28%), and foundations (18%-23%). In the survey, patients rated conversations with health care providers most helpful, but patients who were interviewed revealed that most physicians often do not initiate conversations about clinical trials, and patients typically do not ask. Primary motivators for trial participation (rated from “does not encourage me at all” to “encourages me very much”) included altruistic goals of advancing medicine (67%), potentially mitigating risks of uncontrolled IBD such as colon cancer (59%), and access to treatment options that could improve quality of life (59%) or would otherwise be unaffordable (52%). Major barriers to participation (rated from “does not discourage me at all” to “discourages me very much”) included invasive screening and monitoring (35%), concern over receiving placebo (35%), or suboptimal treatment (33%), and concerns about posttrial access to study medication (27%). The majority (68%) reported that being in a clinical trial means being a “guinea pig” for an experimental treatment. Conclusion Opportunities to improve patients’ clinical trial experience in IBD include better communication with health care providers and improved patient education about clinical trial design and ethics. Ultimately, a better understanding of the patient perspective will be important for more informed patients and potentially higher recruitment and enrollment.

The Use of An Online Case Database to Obtain Clinical and Psychosocial Information Related to the Selection of and Experience with Initial Systemic Therapy for Multiple Myeloma.

Blood ◽  
2009 ◽  
Vol 114 (22) ◽  
pp. 1408-1408
Author(s):  
Neil Love ◽  
Sagar Lonial ◽  
Kathryn Ziel ◽  
Douglas Paley ◽  
Melanie Elder ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Multiple Myeloma ◽  
Systemic Therapy ◽  
Trial Participation ◽  
Psychosocial Variables ◽  
Community Based ◽  
Term Survival ◽  
Web Based ◽  
Presenting Symptoms ◽  
Selection Of

Abstract Abstract 1408 Poster Board I-430 Background: Historically, available information on the clinical course of patients with cancer has been primarily derived from clinical trial reports, and population and hospital registries such as SEER and the American College of Surgeons. While these resources provide useful data on traditional clinical factors, presentation of the results can be delayed, the findings may not be reflective of community-based practice, and psychosocial variables are generally not included. To address these issues, we designed a web-based tool to gather multidimensional information in a rapid and reliable manner, which was pilot-tested in multiple myeloma (MM). Methods: A 60-question case form was developed that requested information on presenting symptoms, diagnostic workup, treatment selection and the treating physician's perceptions and observations of a number of psychosocial variables. US community-based medical oncologists were recruited to enter anonymous case data on patients in their practices diagnosed with MM since January 1, 2008. Invited physicians had previously participated in CME programs developed by our group, and were provided modest, per-patient honoraria. Results: From April 10-27, 2009, 41 physicians entered a total of 203 MM cases in the data bank (minimum 2 cases, maximum 10, median 5). The median patient age was 67, 60% were men, 54% were retired, 97% had health insurance and 64% lived with a spouse or partner, most of whom accompanied the patient to office visits. In 64% of cases, physicians believed that patients had “a great deal” of family support. In 80%, the patient was considered “very or somewhat” proactive toward obtaining medical information, and in 64% the oncologist provided a quantitative estimate of long-term survival. Physicians considered 71% of patients “calm and accepting” of the diagnosis. Only 36% of patients were PS 0, and multiple cancer-related symptoms were common. ISS staging and the use of cytogenetic analyses were inconsistent (Table 1). A variety of systemic regimens were initiated, and treatment resulted in “significant” or “major” toxicities in 21%. The most common side effects were fatigue (47%), neutropenia (28%), thrombocytopenia (25%) and peripheral neuropathy (24%). Bisphosphonates were administered to 77% of patients, mostly zoledronic acid (83%). Clinical trial participation was discussed in 34% of cases, and 22 people (11% of the total) enrolled in a study. In 15% of the cases the oncologist found management to be “somewhat” or “very” challenging and would have liked input on the case. Conclusions: This web-based instrument allowed rapid and efficient collection of relevant information and provided a snapshot of newly diagnosed MM in community-based practice. Clinical findings revealed several potential “knowledge gaps,” represented by heterogeneity in the selection of initial systemic therapy and the lack of adequate staging and prognostic information, including cytogenetics. The psychosocial data obtained may be useful in planning MM support programs, and could be compared to similar information gathered directly from patients. Furthermore, in almost one in six cases, oncologists would have liked to have assistance in making management decisions. These initial findings document the need for related clinical support and education programs that use this information as a benchmark for improvement. Disclosures: Lonial: Amgen, Inc: Consultancy; Bristol-Myers Squibb Co: Consultancy; Celgene Corp: Consultancy; Millennium Pharmaceuticals Inc: Consultancy; Novartis Pharmaceuticals Corp: Consultancy; Ortho Biotech Products LP: Consultancy.

Distribution and geographic accessibility of prostate cancer clinical trials in the United States.

2014 ◽  
Vol 32 (4_suppl) ◽  
pp. 59-59 ◽  
Author(s):  
Matt D. Galsky ◽  
Asma Latif ◽  
Kristian D. Stensland ◽  
Erin L. Moshier ◽  
Russell McBride ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
United States ◽  
Clinical Trial ◽  
Clinical Trials ◽  
Geographic Distribution ◽  
The United States ◽  
First Line ◽  
Trial Site ◽  
Lorenz Curves ◽  
Number Of Patients

59 Background: An extremely small proportion of patients with cancer in the United States (US) enroll in clinical trials. While several barriers to trial accrual have been described, the geographic distribution and accessibility of clinical trial sites has not been comprehensively explored. Methods: ClinicalTrials.gov was queried to identify all active US clinical trials exploring first-line therapies for metastatic prostate cancer (PCa) on 9/16/2012. We evaluated the geographic distribution of trial sites and determined the relationship between the number of sites and the number of patients with advanced PCa per county and evaluated heterogeneity using Lorenz curves. We also estimated the minimum driving distance required to access a clinical trial site from each ZIP code in the continguous US; a distance >30 miles was defined as high travel burden consistent with prior studies. Results: We identified 958 sites associated with 42 PCa clinical trials (Table). The geographic distribution of clinical trial sites was very inhomogeneous with several states having only 1-2 trial sites. Among 3185 US counties, 2,669 (83.8%) had no clinical trials available for first-line treatment of metastatic PCa. Counties with larger populations of patients with advanced PCa had significantly higher numbers of clinical trial sites. For every 100 additional patients with advanced PCa per county, the number of available trial sites increased by 21.0% (95% CI: 16.5-25.7%). However, Lorenz curves indicated a high degree of inequality in trial accessibility (Gini index 0.71). Approximately 31% of the US population resided >30 miles from a PCa trial site. Conclusions: Clinical trials sites are poorly accessible, geographically, to a large subset of US PCa patients, a finding that likely contributes to dismal accrual. Innovative solutions are required to address geographic barriers to access. [Table: see text]

scholarly journals Clinical trial participation in America: The roles of eHealth engagement and patient–provider communication

2021 ◽  
Vol 7 ◽  
pp. 205520762110676
Author(s):  
Shaohai Jiang ◽  
Y. Alicia Hong
Keyword(s):  
Clinical Trial ◽  
Clinical Trials ◽  
The United States ◽  
Equation Modeling ◽  
Trial Participation ◽  
Provider Communication ◽  
Clinical Trial Participation ◽  
Patient Centered ◽  
Targeted Interventions ◽  
Patient Provider Communication

Objective Public participation in a clinical trial is the foundation of clinical research and the cornerstone for the discovery of new treatment and improving health outcomes. This study aims to examine how eHealth engagement, patient–provider communication, and clinical trial knowledge are associated with clinical trial participation in the United States. Methods Data were drawn from the Health Information National Trends Survey Iteration 5 Cycle 4 conducted in 2020. The sample included 3865 American adults aged 18 years and above. Path analysis using structural equation modeling and hierarchical linear regression was performed to examine the effects of eHealth engagement and patient–provider communication on clinical trial participation. Results About 5% of American adults have ever participated in a clinical trial. Younger adults, males, minorities, and people with lower education, less clinical trial knowledge, and less eHealth engagement were less likely to participate. After controlling for demographic variables, we found that more eHealth engagement led to a better knowledge of clinical trials, which was strongly associated with participation. Further, patient-centered communication did not directly lead to clinical trial participation; instead, it positively moderated the relationship between clinical trial knowledge and participation. Conclusions The national survey data indicate that American participation in clinical trials remains low and a significant disparity exists. Within the context of the eHealth movement, it is critical to implement targeted interventions to improve clinical trial knowledge, address the digital divide, and enhance patient-centered communication.

scholarly journals Cancer Clinical Trial Participation at the 1-Year Anniversary of the Outbreak of the COVID-19 Pandemic

2021 ◽  
Vol 4 (7) ◽  
pp. e2118433
Author(s):  
Joseph M. Unger ◽  
Hong Xiao ◽  
Michael LeBlanc ◽  
Dawn L. Hershman ◽  
Charles D. Blanke
Keyword(s):  
Clinical Trial ◽  
Cancer Clinical Trial ◽  
Trial Participation ◽  
Clinical Trial Participation
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