Dataset Information

Utilizing a large-scale biobanking registry to assess patient priorities and preferences for cancer research and education.

ABSTRACT: Patients consented to biobanking studies typically do not specify research conducted on their samples and data. Our objective was to gauge cancer biobanking participant preferences on research topics. Patient-participants of a biobanking study at a comprehensive cancer center who had an appointment within the last 5 years, had a valid email address, and with a last known vital status of alive, were emailed a newsletter containing a link to a survey about preferences and priorities for research. The survey assessed demographics and research interest in three domains: cancer site, cancer-related topics, and issues faced by cancer patients. 37,384 participants were contacted through email to participate in the survey. 16,158 participants (43.2%) opened the email, 1,626 (4.3% overall, 10% of those who opened the email) completed the survey, and 1,291 (79.4% of those who completed the survey) selected at least one research priority. Among those who selected at least one research priorities for cancer-relevant topics, the most commonly selected were cancer treatment (66%), clinical trials (54%), and cancer prevention (53%). Similarly, the most selected priorities for cancer-related issues faced by patients were physical side effects of cancer (57%), talking to the oncologist (53%), and emotional challenges due to cancer (47%). Differences by gender were observed, with females reporting more interest in research generally. Cancer patients participating in a biobanking protocol prioritized research on treatments, prevention and side effects, which varied by gender.

SUBMITTER: Hathaway CA

PROVIDER: S-EPMC7864448 | biostudies-literature | 2021

REPOSITORIES: biostudies-literature

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Utilizing a large-scale biobanking registry to assess patient priorities and preferences for cancer research and education.

Hathaway Cassandra A CA Siegel Erin M EM Chung Christine H CH Pabbathi Smitha S Vidrine Jennifer J Vadaparampil Susan S Tworoger Shelley S SS

PloS one 20210205 2

Patients consented to biobanking studies typically do not specify research conducted on their samples and data. Our objective was to gauge cancer biobanking participant preferences on research topics. Patient-participants of a biobanking study at a comprehensive cancer center who had an appointment within the last 5 years, had a valid email address, and with a last known vital status of alive, were emailed a newsletter containing a link to a survey about preferences and priorities for research. ...[more]

PMID: 33544776

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Project description:Identifying which diseases represent a priority is crucial to optimize resources for diagnostics, control, and prevention. Here, the impact of 111 poultry pathogens belonging to Viruses (n = 31), Bacteria (n = 33), and Other (n = 47) was assessed using the H-index. The overall mean H-indexes suggested that poultry Viruses have statistically greater impact than Bacteria, which in turn are statistically more relevant than Others. Among the 20 highest H-indexes, 45% were zoonotic, and almost a third was Office International des Epizooties-listed. Avian influenza virus (H-index 127), Salmonella enteritidis and Salmonella typhimurium (H-index 72), and Eimeria spp (H-index 70) ranked the highest in Virus, Bacteria, and Other, respectively. Pathogens that produce overt clinical diseases and economic damage, cause immunosuppression, and/or are zoonotic had the highest H-index scores. The evolution of citations of particular pathogens reflected severe poultry outbreaks and/or zoonotic outbreaks in relatively wide geographic areas. Also, the evolution of citations based on taxonomic groups mirrored major changes in poultry production practices and management throughout history. Thus, Others were the most cited pathogens until the 1970s and, following 3 decades of unpopularity because of widespread use of intensive production practices, regained importance in the 2000s thanks to welfare regulation changes. Citations for Bacteria increased especially from the 1990s onward, probably because of the ban of growth promoters in western countries and the need to find new control methods for bacterial and protozoal infections. In general, countries with the greatest poultry production and research budgets had higher research production, that is the United States of America (USA) and China. Interestingly, the United Kingdom was among the top research producers despite falling behind other countries in poultry production and research budget. Moreover, the USA exhibited the strongest poultry research production based on number and diversity of publications (Dcos-index). In conclusion, the H-index could be a valid, simple tool to prioritize funding or interest in poultry diseases, especially when used as a preliminary selection approach in combination with other metrics.

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Dataset Information

Utilizing a large-scale biobanking registry to assess patient priorities and preferences for cancer research and education.

Publications

Utilizing a large-scale biobanking registry to assess patient priorities and preferences for cancer research and education.

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