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

Gallicchio, Lisa; Daee, Danielle L.; Rotunno, Melissa; Barajas, Rolando; Fagan, Sarah; Carrick, Danielle M.; Divi, Rao L.; Filipski, Kelly K.; Freedman, Andrew; Gillanders, Elizabeth M.; Lam, Tram Kim; Martin, Damali N.; Rogers, Scott D.; Verma, Mukesh; Nelson, Stefanie A.

doi:10.1158/1055-9965.epi-20-1796

Cited by 13 publications

(16 citation statements)

References 2 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Some of these cancers may contribute to even greater impairments in quality of life and therefore require increased attention in survivorship research. [29] For instance, our audit found that there were no abstracts that specifically addressed survivorship issues in people with rare cancers, such as liver malignancy or sarcoma. Although this highlights a gap in survivorship research for underrepresented cancers, [29,30] it may also be a reflection of existing infrastructure priorities and funding patterns.…”

Section: Discussionmentioning

confidence: 98%

“…[29] For instance, our audit found that there were no abstracts that specifically addressed survivorship issues in people with rare cancers, such as liver malignancy or sarcoma. Although this highlights a gap in survivorship research for underrepresented cancers, [29,30] it may also be a reflection of existing infrastructure priorities and funding patterns. [28,31] Overall, the finding that most studies included mixed cancer types is encouraging considering that in many cases, cancer type is not always the primary determinant of how and whether survivors experience social and psychological issues, and interventions can be effective for a broad range of cancers.…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Survivorship representation at IPOS World Congress: abstract review and analysis

Gitonga,

Thornton,

Schulte

et al. 2023

Journal of Psychosocial Oncology Research &Amp; Practice

View full text Add to dashboard Cite

Background: Advancements in cancer treatments have enabled more people worldwide to survive cancer, but many experience lasting impacts. The International Psycho-Oncology Society (IPOS) is a global professional organization which hosts an annual World Congress. This study reviewed survivorship content from the World Congress meetings to understand areas of focus, apparent strengths and weaknesses, and global representation. Methods: Peer-reviewed abstracts presented in 2017, 2018, 2019, and 2021 were reviewed. Abstracts were identified by searching for “survivor.” Identified abstracts were read in full to extract content of interest (population of interest, cancer type, number of participants, study design, study topic, first author/country, and international collaboration). Coding was defined a priori. Data were extracted using REDCap. Inter-rater reliability checks were performed. Results: A total of 1813 abstracts were identified and reviewed. The proportion of survivorship-focused abstracts ranged from 13.2%–20.7% annually. Breast cancer dominated survivorship work. The most frequently addressed topics included distress/anxiety/depression (36.6%), quality of life (28.6%), and health behaviors (15.5%). Nearly three-quarters (73%) of abstracts focused on adult populations, and there was apparent international collaboration in 12%–20%. Authorships and abstracts were primarily from high-income countries (91%). Most studies were observational (44%); few were randomized controlled trials (4%). Conclusions: This study found overrepresentation of authorship from some countries. Many topics, patient populations, and countries were not highly represented. IPOS might consider efforts to remedy this imbalance with the ultimate goal of improving psychosocial care for those affected by cancer, globally.

show abstract

Section: Discussionmentioning

confidence: 98%

Section: Discussionmentioning

confidence: 99%

Survivorship representation at IPOS World Congress: abstract review and analysis

Gitonga,

Thornton,

Schulte

et al. 2023

Journal of Psychosocial Oncology Research &Amp; Practice

View full text Add to dashboard Cite

show abstract

“…Instead, those malignancies are combined in the category “bone and joint” cancers. This, in addition to the fact that bone and joint cancers are understudied, is a practical concern that leaves patients, clinicians, and policy makers with limited information (Gallicchio et al, 2021 ; Greenlee et al, 2010 ).…”

Section: Discussionmentioning

confidence: 99%

“…In contrast, the most common cancer sites were well represented by these recourses. Similarly, epidemiological studies and genomic resources were largely focused on common cancers, while rare cancers were studied to lesser extent (Gallicchio et al, 2021 ).…”

Section: Discussionmentioning

confidence: 99%

The occurrence of bone and joint cancers and their association with rural living and radon exposure in Iowa

Nilles

Lim

Boyer

et al. 2022

Environ Geochem Health

View full text Add to dashboard Cite

Primary bone and joint cancers are rare and understudied, yet these neoplasms are difficult to treat and impact all age groups. To explore the long-term changes in the occurrence of bone and joint cancers, patients diagnosed with these neoplasms between 1975 and 2016 were identified in the Surveillance Epidemiology and End Results of the National Cancer Institute of the USA. The age-adjusted incidence (AAIR) and mortality (AAMR) rates were calculated for three decades and compared to AAIR and AAMR in years 1975–1984. By using the population-based cancer registries of the USA, Iowa was identified as a state with increased cases of bone and joint malignancies. The bone and joint cancer cases in Iowa were correlated with the percentage of rural population, the average farmland size, or the residential radon levels. Results demonstrated that the mean AAIR of bone and joint cancers for US female and male patients (< 50 years of age) increased from 0.57 (95% C.I. 0.55–0.63) and 0.76 (95% C.I. 0.69–0.82) for years 1975–1984 to 0.71 (95% C.I. 0.66–0.76) and 0.94 (95% C.I. 0.87–1.07) for years 2005–2014, respectively. The increase in bone and joint cancer cases in Iowa positively correlated with the percentage rural population ( R = 0.222, P < 0.02), and the average farmland size ( R = 0.236, P < 0.02) but not the radon levels ( R = − 0.038, P < 0.7). The findings revealed that patients younger than 50 years of age and those who resided in rural areas and engaged in farming were more likely to be diagnosed with primary bone and joint cancers. Supplementary Information The online version contains supplementary material available at 10.1007/s10653-022-01261-5.

show abstract

“…8 Given the limited studies on rare cancers, their occurrence increases, as a group of diseases that are characterized by significantly worse survival rates vs more common cancers. 9 These factors highlight the social need to get efforts on research into their biological basis, etiological factors, the most effective new therapies and the organization of healthcare to improve access to best practices and innovation. Complementarily, early diagnosis and diagnostic accuracy are among the first challenges to overcome, as approximately one-third of tumors are reclassified.…”

Section: ■ Introductionmentioning

confidence: 99%

One-Drop Serum Screening Test for Anal Cancer in Men via Infrared Attenuated Total Reflection Spectroscopy

et al. 2022

View full text Add to dashboard Cite

Rare cancers are a challenge for clinical practice, the treatment experience at major centers to which rare cancers are referred is limited and are the most difficult to diagnose. Research to identify causes or develop prevention and early detection strategies is extremely challenging. Anal cancer is an example of a rare cancer, with the human papillomavirus (HPV) infection being the most important risk factor associated. In the early stages, anal cancer does not exhibit evident symptoms. This disease is diagnosed by means of anoscopy, which diagnoses some cases of early cancer; nevertheless, sensitivity of this test ranges between 47 and 89%. Therefore, the development of new, effective, and evidence-based screening methodologies for the early detection of rare cancers is of great relevance. In this study, the potential of ATR-FTIR spectroscopy has been explored as a sensitive, nondestructive, and inexpensive analytical method for developing disease screening platforms in serum. Spectral differences were found in the regions of 1700−1100 and 1700−1400 cm −1 between the control group and the anal cancer group related to the presence of proteins and nucleic acids. The chemometric analysis presented differences in the spectral fingerprints for both spectral regions with a high sensitivity ranging from 95.2 to 99.9% and a specificity ranging from 99.2 to 100%. This is the first step that we report for a methodology that is fast, nondestructive, and easy to perform, and the high sensitivity and specificity of the method are the basis for extensive research studies to implement these technologies in the clinical field.

show abstract

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

Cited by 13 publications

References 2 publications

Survivorship representation at IPOS World Congress: abstract review and analysis

Survivorship representation at IPOS World Congress: abstract review and analysis

The occurrence of bone and joint cancers and their association with rural living and radon exposure in Iowa

One-Drop Serum Screening Test for Anal Cancer in Men via Infrared Attenuated Total Reflection Spectroscopy

Contact Info

Product

Resources

About