To Make Progress in Rare Cancers, Patients Must Lead the Way

Marcus, Amy Dockser

doi:10.1200/jco.2009.21.9212

Cited by 9 publications

(9 citation statements)

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“…Comprehensive epidemiological studies on rare cancers are scanty and such investigations should be performed in each developed and developing country. Finally, basic research centring on unusual cancer types is also likely to pay off in the long term due to lower competition when compared to cancers with higher prevalence and issues related to the cancer biology11. However, there is no easy solution in this context, but several components and potential explanations have to be formulated to increase the knowledge on rare tumours.…”

Section: Challenges In Rare Cancersmentioning

confidence: 99%

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Rare cancers: Challenges & issues

Pillai

Jayasree

2017

Indian J Med Res

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Rare cancers account for about 22 per cent of all cancers diagnosed worldwide, disproportionately affecting some demographic groups, with an occurrence of less than 6 per 100,000 individuals annually. Many rare cancers in adults, adolescents and children are not curable, and patients and care providers have little option to take therapeutic decisions. The epidemiology of rare cancers is a challenging area of study but is inadequately addressed. Despite efforts mainly in some European nations, a few improvements have been observed in the management of rare cancers. Reasons for this obvious stagnation are multifactorial and are mainly inherent to logistical difficulties in carrying out clinical trials in very small patient populations, hesitation of the pharmaceutical industry to spend in small markets and complexity in creating adequate information for the development of cost-effective drugs. Rare cancers also face specific challenges that include late and incorrect diagnosis, lack of clinical expertise and lack of research interest and development of new therapies. The utilization of nationally representative study findings for the patients’ evaluation may possibly offer chances to find out pathogenesis and prevalence, and this will eventually lead to control and prevention. Currently, advancing targeted therapies offer a great opportunity for the better management of rare cancers. Conducting clinical trials with small patient population, innovative clinical trial approach, prevailing controlling obstacles for international cooperation and financial support for research are the present challenges for rare cancers. The International Rare Cancers Initiative functions as a main platform for achieving new international clinical trials in rare tumours. This review delineates the current challenges and issues in the interpretation, management and research scenarios of rare cancers.

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Section: Challenges In Rare Cancersmentioning

confidence: 99%

“…The incidence is fast increasing in developing countries, where nationwide prevalence is fast mounting those accounted in Western Europe and North America411. Figures from population-based cancer registries from India12 and China13 indicate that actual occurrence of cancer is low in Asia as compared to Western Europe and North America.…”

Section: Introductionmentioning

confidence: 99%

Rare cancers: Challenges & issues

Pillai

Jayasree

2017

Indian J Med Res

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“…Although rare diseases are not considered a public health priority, the sheer numbers of all known rare tumors represent a significant burden to society; for instance, it is believed that more than 200 cancers with an incidence lower than 40,000 cases are reported each year in the United States, and they may account for up to 25% of the mortality by cancer in that country. 1,2 Despite efforts mainly driven by research carried out in developed countries, little progress has been seen in the treatment of the majority of rare tumor types. Furthermore, diagnosing rare tumors may be challenging, and the scenario for the stricken individual is further darkened by the lack of appropriate knowledge about the course of disease and its management.…”

Section: Discussionmentioning

confidence: 99%

“…Not surprisingly, this outlook is perceived as deeply frustrating by patients suffering from such devastating disorders. 2 …”

Section: Discussionmentioning

confidence: 99%

Rare tumors research in emerging countries

2010

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Rare tumors, when considered as a group, represent a significant burden to society as they may account for up to 25% of the mortality by cancer in nations like the United States. In contrast with the current scenario in highly incident cancer types, little progress has been achieved in the treatment of the most rare cancers. The reasons for this apparent stagnation are mostly intrinsic to logistical difficulties in performing large clinical trials in rare diseases and will be addressed further in this article. Because both cancer incidence and clinical research are booming in emerging nations, we also aim to address the current and future role of these countries in research and the drug development process in rare tumor types.

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“…There has traditionally been a lack of public funding in rare cancers for basic research that is the prerequisite of any therapeutic advance. In rare cancers, PAs' role is not and can't be only that of fundraising for supporting basic research but also that of driving research efforts [6,7]. Disease models, including cell lines and xenografts, are critical resources to understand biology and identify new treatment strategies in particular for very rare cancers still without care.…”

mentioning

confidence: 99%