Dataset Information

Epidemiologic Research of Rare Cancers: Trends, Resources, and Challenges.

ABSTRACT:

Background

The goals of this project were to assess the status of NCI's rare cancer-focused population science research managed by the Division of Cancer Control and Population Sciences (DCCPS), to develop a framework for evaluation of rare cancer research activities, and to review available resources to study rare cancers.

Methods

Cancer types with an overall age-adjusted incidence rate of less than 20 cases per 100,000 individuals were identified using NCI Surveillance, Epidemiology and End Results (SEER) Program data. SEER data were utilized to develop a framework based on statistical commonalities. A portfolio analysis of DCCPS-supported active grants and a review of three genomic databases were conducted.

Results

For the 45 rare cancer types included in the analysis, 123 active DCCPS-supported rare cancer-focused grants were identified, of which the highest percentage (18.7%) focused on ovarian cancer. The developed framework revealed five clusters of rare cancer types. The cluster with the highest number of grants (n = 43) and grants per cancer type (10.8) was the cluster that included cancer types of higher incidence, average to better survival, and high prevalence (in comparison with other rare cancers). Resource review revealed rare cancers are represented in available genomic resources, but to a lesser extent compared with more common cancers.

Conclusions

This article provides an overview of the rare cancer-focused population sciences research landscape as well as information on gaps and opportunities.

Impact

The findings of this article can be used to develop efficient and comprehensive strategies to accelerate rare cancer research.See related commentary by James V. Lacey Jr, p. 1300.

SUBMITTER: Gallicchio L

PROVIDER: S-EPMC8254778 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:The unprecedented generation of large volumes of biodiversity data is consistently contributing to a wide range of disciplines, including disease ecology. Emerging infectious diseases are usually zoonoses caused by multi-host pathogens. Therefore, their understanding may require the access to biodiversity data related to the ecology and the occurrence of the species involved. Nevertheless, despite several data-mobilization initiatives, the usage of biodiversity data for research into disease dynamics has not yet been fully leveraged. To explore current contribution, trends, and to identify limitations, we characterized biodiversity data usage in scientific publications related to human health, contrasting patterns of studies citing the Global Biodiversity Information Facility (GBIF) with those obtaining data from other sources. We found that the studies mainly obtained data from scientific literature and other not aggregated or standardized sources. Most of the studies explored pathogen species and, particularly those with GBIF-mediated data, tended to explore and reuse data of multiple species (>2). Data sources varied according to the taxa and epidemiological roles of the species involved. Biodiversity data repositories were mainly used for species related to hosts, reservoirs, and vectors, and barely used as a source of pathogens data, which was usually obtained from human and animal-health related institutions. While both GBIF- and not GBIF-mediated data studies explored similar diseases and topics, they presented discipline biases and different analytical approaches. Research on emerging infectious diseases may require the access to geographical and ecological data of multiple species. The One Health challenge requires interdisciplinary collaboration and data sharing, which is facilitated by aggregated repositories and platforms. The contribution of biodiversity data to understand infectious disease dynamics should be acknowledged, strengthened, and promoted.

Project description:During the SARS-CoV-2 pandemic, astonishingly rapid research averted millions of deaths worldwide through new vaccines and repurposed and new drugs. Evidence use informed life-saving national policies including non-pharmaceutical interventions. Simultaneously, there was unprecedented waste, with many underpowered trials on the same drugs. We identified lessons from COVID-19 research responses by applying WHO's framework for research systems. It has four functions-governance, securing finance, capacity-building, and production and use of research-and nine components. Two linked questions focused the analysis. First, to what extent have achievements in knowledge production and evidence use built on existing structures and capacity in national health research systems? Second, did the features of such systems mitigate waste? We collated evidence on seven countries, Australia, Brazil, Canada, Germany, New Zealand, the United Kingdom and the United States, to identify examples of achievements and challenges.We used the data to develop lessons for each framework component. Research coordination, prioritization and expedited ethics approval contributed to rapid identification of new therapies, including dexamethasone in the United Kingdom and Brazil. Accelerated vaccines depended on extensive funding, especially through the Operation Warp Speed initiative in the United States, and new platforms created through long-term biomedical research capacity in the United Kingdom and, for messenger ribonucleic acid (mRNA) vaccines, in Canada, Germany and the United States. Research capacity embedded in the United Kingdom's healthcare system resulted in trial acceleration and waste avoidance. Faster publication of research saved lives, but raised challenges. Public/private collaborations made major contributions to vastly accelerating new products, available worldwide, though unequally. Effective developments of living (i.e. regularly updated) reviews and guidelines, especially in Australia and Canada, extended existing expertise in meeting users' needs. Despite complexities, effective national policy responses (less evident in Brazil, the United Kingdom and the United States) also saved lives by drawing on health research system features, including collaboration among politicians, civil servants and researchers; good communications; and willingness to use evidence. Comprehensive health research strategies contributed to success in research production in the United Kingdom and in evidence use by political leadership in New Zealand. In addition to waste, challenges included equity issues, public involvement and non-COVID research. We developed recommendations, but advocate studies of further countries.