Cancer screening uptake by women from India's largest state Uttar Pradesh: district-wise analysis from the fifth round of National Family Health Survey (2019-2021).

The Government of India (GOI) has launched a nationwide cervical, breast and oral cancer prevention and control program. However, the fifth round of the National Family Health Survey (NFHS-5), a nationwide survey conducted by the Ministry of Health and Family Welfare (MoHFW), GOI, has shown concerning results on screening uptake by both men and women across India. This study was conducted to describe the uptake of cancer screening by women residing in Uttar Pradesh (UP), the largest state of India. We analyzed NFHS-5 data available in public domain to determine the number of women (aged 30-49 years) participating in cancer screening across the 71 districts in UP state. We utilized population projections for the year 2021 provided by the population projections for India and states for calculating the number of women. The district-wise estimation was done using a projection of district-level annual population. Although the GOI has made screening available for common cancers, NFHS-5 results indicated that the screening uptake among women aged 30-49 years is a cause for concern. The data revealed less than 1% of women underwent screening, and some of the districts showed no screening uptake. GOI has laid down a framework for cancer screening; however, poor participation among women calls for research to understand the barriers to cancer screening and to develop interventions to address these barriers.

Factors influencing tobacco quitting: findings from National Tobacco-Quitline Services, Mumbai, India.

The Government of India established National Tobacco Quitline Services (NTQLS) to provide free and effective telephonic counselling to help people quit tobacco. The objective of the paper is to present the data of tobacco quitters who quit tobacco through NTQLS, Mumbai, in the years 2021-2022 and the factors that influenced tobacco quitting. This is a prospective study where individuals willing to quit tobacco utilised NTQLS. Effective counselling was provided and was followed up. Multiple logistic regression analysis was conducted. Tobacco quitting is the dependent variable while sociodemographic characteristics, tobacco consumption habits, previous quit attempts, alcohol consumption, other substance use and co-morbidity were independent variables. In the years 2021-2022, a total of 448,893 calls hit the system. Of these, 127,163 (28.3%) calls were attended. Of the attended calls, a quit date was set for 21,504 calls (16.9%); of these, 8,276 (38.5%) callers quit tobacco. Individuals with no previous quit attempts [OR: 1.48, 95% confidence interval (CI): 1.25-1.75], never consumed alcohol (OR: 1.37, 95%CI: 1.2-1.56), consumed tobacco within 6-30 minutes (OR: 1.29, 95% CI: 1.12-1.49) and 30-60 minutes after waking up (OR: 1.26, 95% CI: 1.05-1.51) had higher quitting rates. While, female callers (OR: 0.59, 95% CI: 0.35-0.99), private sector workers (OR: 0.70, 95% CI: 0.61-0.81), individuals consuming more than ten tobacco units/packets (OR: 0.70, 95% CI: 0.61-0.79), tobacco use more than 10 years (OR: 0.85, 95% CI: 0.73-0.97), expenditure of more than 5,000 rupees on tobacco (OR: 0.58, 95% CI: 0.44-0.77) and those with no known co-morbid conditions (OR: 0.8, 95% CI: 0.71-0.91) were less likely to quit tobacco. Reduced tobacco consumption will inadvertently reduce the non-communicable disease (NCD) burden and help in achieving the sustainable development goals related to tobacco control and NCD. Quitline plays an important role in tobacco control.

A scoping review on the errors in medical certification of the cause of death in India.

Medical certification of the cause of death provides epidemiological information for developing cause-specific mortality and disease trends, guiding the monitoring of health programmes and allocating health resources. Therefore, providing correct information on the cause of death is essential. This study describes the errors in medical certification of the cause of death in India. We conducted a scoping review through a systematic inquiry in four databases, PubMed, ProQuest, Google Scholar and EBSCO, for all published articles reporting errors in medical certification of cause of death in India between December 31, 1998 and December 31, 2020. The review outcomes were the proportion of major and minor certification errors reported. Out of 135 screened studies, 20 were included based on the eligibility criteria. We observed a high proportion of certification errors and a large proportion of variation. Major certification errors were in the form of incorrect underlying cause of death (8.5-99.2%) and incorrect chain of events leading to death (12-64.7%). Minor certification errors in the form of missing clerical details, abbreviations and illegible handwriting were 0.3-100 per cent. The proportion of incomplete death certificates ranged between 12-100 per cent. Absence of time intervals was the most common type of certification error (62.3-99.5%). Training of doctors to accurately certify the medical cause of death and its addition to medical education is urgently needed to ensure accurate information for mortality-related statistics. A uniform methodology for auditing and reporting errors in medical certification of cause of death should be adopted.

Regional variations and inequalities in testing for early detection of breast and cervical cancer: evidence from a nationally representative survey in India.

BACKGROUND: The burden of cancer in India has been rising, yet testing for early detection remains low. This study explored inequalities in the uptake of breast cancer (BC) examination and cervical cancer (CC) among Indian women, focusing on socioeconomic, regional, and educational differences. METHODS: Data from the 2019-21 National Family Health Survey (n=353,518) were used to assess the uptake of BC examination and CC testing. Inequalities were quantified using the slope index of inequality (SII), relative index of inequality (RII), and relative concentration index (RCI). SII measured absolute inequality, while RII and RCI assessed relative inequality between disadvantaged and advantaged groups. RESULTS: The ever uptake of tests for early detection of BC and CC were low at 9 and 20 per 1,000 women, respectively. Higher uptake was observed among women from the richest households compared to the poorest (SII: 1.1 for BC and 1.8 for CC). The magnitude of relative socioeconomic inequalities was more pronounced in rural areas (RCI: 22.5 for BC and 21.3 for CC) compared to urban areas. Similarly, higher-educated women were 4.84 times (RII: 4.84) and 2.12 times (RII: 2.12) more likely to undergo BC examination and CC testing, respectively, compared to non-educated women. The northeastern region exhibited greater socioeconomic inequality, while the western region showed more education-based inequality. CONCLUSION: The lower uptake of BC examination and CC testing and the marked inequalities underscore the need for targeted interventions to improve access and utilization of testing services, especially among lower-educated women, and those in rural areas.

Clinical breast examination: A screening tool for lower- and middle-income countries.

Breast cancer (BC) remains a global health challenge, devastatingly impacting women's lives. Low-and-middle-income countries (LMIC), such as India, experience a concerning upward trend in BC incidence, necessitating the implementation of cost-effective screening methods. While mammography, ultrasonography, and magnetic resonance imaging are preferred screening modalities in resource-rich settings, limited resources in LMICs make clinical breast examination (CBE) the method of choice. This review explores the merits of CBE, its coverage, barriers, and facilitators in the Indian context for developing strategies in resource-constrained settings. CBE has shown significant down-staging and cost-effectiveness. Performed by trained health workers in minutes, CBE offers an opportunity for education about BC. Various individual and health system barriers, such as stigma, financial constraints, and the absence of opportunistic screening hinder CBE coverage. Promising facilitators include awareness programs, capacity building, and integrating CBE through universal health care. No healthcare provider must miss any screening opportunity through CBE.

Uniqueness of lung cancer in Southeast Asia.

Lung cancer varies between Caucasians and Asians. There have been differences recorded in the epidemiology, genomics, standard therapies and outcomes, with variations according to the geography and ethnicity which affect the decision for optimal treatment of the patients. To better understand the profile of lung cancer in Southeast Asia, with a focus on India, we have comprehensively reviewed the available data, and discuss the challenges and the way forward. A substantial proportion of patients with lung cancer in Southeast Asia are neversmokers, and adenocarcinoma is the common histopathologic subtype, found in approximately a third of the patients. EGFR mutations are noted in 23-30% of patients, and ALK rearrangements are noted in 5-7%. Therapies are similar to global standards, although access to newer modalities and molecules is a challenge. Collaborative research, political will with various policy changes and patient advocacy are urgently needed.

A Glimpse into the Epidemiology of Geriatric Cancers in India: Report from the Indian Population Based Cancer Registries.

INTRODUCTION: Indian population is aging and the cancer rates are rising.  Older adults (OAs)(≥60 years) with cancer require specialized care.  However, data on geriatric cancer epidemiology is scarce. METHODS: The study compiled the geriatric cancer data from the published reports(2012-2014) of Indian population-based cancer registries(PBCRs). RESULTS: Of the 1,61,363 cancers registered in the Indian PBCRs, 72,446(44.9%) occur in OAs, with  21,805(30.1%), 18,349(25.3%), 14,645(20.2%), and 17,647(24.4%) occurring in 60-64, 65-69, 70-74, and ≥75year age groups.  The truncated incidence rates for OAs are 555.9,404.5, and 481.9 for males, females, and OA populations respectively.  The common cancers are lung, prostate, and esophagus cancers in males, breast, cervix, and lung in females.  The overall common cancers are lung, prostate, and breast.  While  >50% of the incident cases of prostate, and bladder cancers occurred in OAs, <20% of Hodgkin lymphoma and thyroid cancers occurred in OAs. OA cancer epidemiology has a regional variation, highest in South India and lowest in Western India. CONCLUSION: The current study quantifies the cancer burden in the Indian geriatric population. Understanding the epidemiology of geriatric cancers is vital to health program planning and implementation. Increased awareness, focused resource allocation, research, and national policies for streamlining care will all help to improve geriatric cancer outcomes.

Burden of tobacco-related cancers in urban, semi-urban and rural setting of Nepal: Findings from population-based cancer registries 2019.

BACKGROUND: Nepal is one of the high prevalent countries for tobacco use in Southeast Asia regions. Tobacco related cancer share the major burden since a decade, however, population-based estimates is still lacking. This study provides results from population-based cancer registries on tobacco-related cancer (TRCs) burden in Nepal. METHODS: The data were collected by population-based cancer registry conducted in nine districts by Nepal Health Research Council. The districts were categorized in urban, semi-urban and rural regions on the basis of geographical locations and facilities available in the regions. Analysis was done to identify tobacco-associated cancer incidence, mortality and patterns along with cumulative risk of having cancer before the age of 75 years. RESULTS: Tobacco-related cancer was 35.3% in men and 17.3% in women. We found that every one in 36 men and one in 65 women developed tobacco-related cancer before age 75 in Nepal. Cancer of lung, mouth, esophagus and larynx were among the five most common tobacco-related cancers in both men and women. The incidence of tobacco-associated cancers was higher in urban region with age adjusted rate 33.6 and 17.0 per 100,000 population for men and women respectively compared to semi-urban and rural regions. Tobacco-associated cancer mortality was significantly higher compared to incidence. CONCLUSION: The prevalence of tobacco-related cancer found high in Nepal despite of enforcement of tobacco control policy and strategies including WHO framework convention on tobacco control. Concerned authorities should focus towards monitoring of implemented tobacco control policy and strategies.

Outcome of early detection approach in control of breast, cervical, and oral cancer: Experience from a rural cancer center in India.

In low- and middle-income countries most of the cancer patients attend the hospital at a late stage and treatment completion of these cases is challenging. The early detection program (EDP), in rural areas of Punjab state, India was initiated to identify breast, cervical, and oral cancer at an early stage by raising awareness and providing easy access to diagnosis and treatment. A total of 361 health education programs and 99 early detection clinics were organized. The symptomatic and self-interested (non-symptomatic individuals who opted for screening) cases visited the detection clinic. They were screened for breast, cervical, and/or oral cancer. Further diagnosis and treatment of screen-positive cases were carried out at Homi Bhabha Cancer Hospital (HBCH), Sangrur. Community leaders and healthcare workers were involved in all the activities. The EDP, Sangrur removed barriers between cancer diagnosis and treatment with the help of project staff. From 2019 to 2023, a total of 221,317 populations were covered. Symptomatic and self-interested individuals attended the breast (1627), cervical (1601), and oral (1111) examinations. 46 breast (in situ-4.3%; localized-52.2%), 9 cervical (localized-77.8%), and 12 oral (localized-66.7%) cancer cases were detected, and treatment completion was 82.6%, 77.8%, and 50.0%, respectively. We compared cancer staging and treatment completion of cases detected through EDP with the cases attended HBCH from Sangrur district in 2018; the difference between two groups is statistically significant. Due to the early detection approach, there is disease down-staging and improvement in treatment completion. This approach is feasible and can be implemented to control these cancers in low- and middle-income countries.

Rural-urban disparity in cancer burden and care: findings from an Indian cancer registry.

BACKGROUND: Cancer incidence and mortality vary across the globe, with nearly two-thirds of cancer-related deaths occurring in low- and middle-income countries. The rural-urban disparity in socio-demographic, behavioural, and lifestyle-related factors, as well as in access to cancer care, is one of the contributing factors. Population-based cancer registries serve as a measure for understanding the burden of cancer. We aimed to evaluate the rural-urban disparity in cancer burden and care of patients registered by an Indian population-based cancer registry. METHODS: This study collected data from Varanasi, Uttar Pradesh, India, between 2017 and 2019. Sex and site-specific age-standardised rates for incidence and mortality per 100,000 population were calculated. Rural-urban disparities in cancer incidence and mortality were estimated through rate differences and standardised rate ratios (with 95% confidence intervals). Univariable and multivariable regressions were applied to determine any significant differences in socio-demographic and cancer-related variables according to place of residence (rural/urban). Crude and adjusted odds ratios with 95% confidence intervals were calculated. RESULTS: 6721 cancer patients were registered during the study duration. Urban patients were older and had better literacy and socioeconomic levels, while rural patients had higher odds of having unskilled or semi-skilled professions. Diagnostic and clinical confirmation for cancer was significantly higher in urban patients, while verbal autopsy-based confirmation was higher in rural patients. Rural patients were more likely to receive palliative or alternative systems of medicine, and urban patients had higher chances of treatment completion. Significantly higher incidence and mortality were observed for oral cancer among urban men and for cervical cancer among rural women. Despite the higher incidence of breast cancer in urban women, significantly higher mortality was observed in rural women. CONCLUSIONS: Low- and middle-income countries are facing dual challenges for cancer control and prevention. Their urban populations experience unhealthy lifestyles, while their rural populations lack healthcare accessibility. The distinctness in cancer burden and pattern calls for a re-evaluation of cancer control strategies that are tailor-made with an understanding of urban-rural disparities. Context-specific interventional programmes targeting risk-factor modifications, cancer awareness, early detection, and accessibility to diagnosis and care are essential.

Quality assessment of a rural population-based cancer registry (PBCR) at Ratnagiri, Maharashtra, India for the years 2017-18.

Background: Cancer registries are valuable resources for cancer control and research. To justify their purpose, their data should be of satisfactory quality by being comparable internationally, complete in their coverage, valid in their values and timely in reporting. This study aimed to assess the quality of the Ratnagiri Population Based Cancer Registry's data for the years 2017-18 across the four dimensions of data quality. Methods: Regarding comparability, the registry procedure was reviewed vis-à-vis the rules they follow for cancer registry operation. We have used four methods for validity: re-abstraction and re-coding, diagnostic criteria methods- like the percentage of microscopically verified (MV%) and of death certificate only (DCO%) cases, missing information like proportion of cases of primary site unknown (PSU%) and internal validity. Semi-quantitative methods were employed for assessing completeness. Timeliness for all years of registry functioning was assessed qualitatively. Results: The overall accuracy rate of the registry was found to be 91.1% (94.7% for demographic and 88% for tumour details). Mortality to incidence ratios were found to be 0.50 for females and 0.59 for males. MV% was found to be 90.8% for males and 91.5% for females. The average number of sources per case was found to be 1.5. DCO% was found to be 2.7%. PSU% was 7.4%. Conclusion: We have positive results regarding the data's validity and comparability, but there is scope for improvement concerning completeness. Continuous training of the registry personnel and monitoring of the registry is recommended.

Electronic nicotine delivery system: a narrative review on growing threat to tobacco control and health of the young Indian population.

The electronic cigarette (EC) was developed as an alternative to cigarette smoking. In less than a decade, the prevalence of past-month EC usage increased from 1.5 to 27.5 % among US high-school students. In the coming years, Asia-Pacific countries will have the highest sales of electronic nicotine/non-nicotine delivery systems (ENDS/ENNDS) after Western Europe. Based on the World Health Organization and Indian Council of Medical Research recommendations, India approved a complete ban on EC in 2019. Even though it has been three years since the ban, EC is still being sold in India's grey markets, where marketing is not regulated. In this narrative review, we discuss that vaping is not just a harm reduction strategy for tobacco smoking cessation but poses a serious threat to India's existing tobacco control efforts as well as the health of the country's young people.

Deciphering the Patterns of Dual Primary Cases Registered at the Hospital-Based Cancer Registry: First Experience from Rural Cancer Center in North India.

Objectives The objective is to present the patterns of dual primary malignancies diagnosed at the Pathology Laboratory of Cancer Hospital with the support from hospital-based cancer registry (HBCR), Sangrur, Punjab, India for the years 2018 and 2019. Methods HBCR abstracts data from electronic medical records. Trained cancer registry staff abstracts cases in standard pro forma. Dual primary was coded as per the International Agency for Research on Cancer rule and was rechecked by the pathologist. Statistical Analysis Data about multiple primary was entered and documented in an Excel sheet. Time interval was calculated by subtracting the date of diagnosis for second primary and first primary. Results A total of 6,933 cases were registered, 45 cases are dual primary (26 females, 19 males) of which 64.4% are synchronous and 35.6% metachronous cases. Seventy-nine percent received cancer-directed treatment for synchronous and 87% for metachronous. The most common sites of the primary tumor were breast (33%), head and neck (22.2%), gynecological sites (11%), prostate (9%), esophagus (4%), and remaining other tumors (20.8%). Most common sites for second malignancies were gastrointestinal (GI) tract (31%), gynecological sites (18%), head and neck (16%), hematological malignancies (7%), soft tissue sarcoma (4%), breast (2%), and other sites (22%). Conclusion More than 70% of cases of primary tumors were in breast, head and neck, gynecological, and prostate. Of these, more than 60% of the second malignancy was found in the GI tract, gynecological, and head and neck sites. Around two-thirds of dual tumors are synchronous. Breast cancer cases have higher incidence of second malignancy. Regular follow-up is necessary to assess the survival of the second primary.

Head and neck cancer burden in India: an analysis from published data of 37 population-based cancer registries.

Head and neck cancer (HNC) is a major public health problem in India. This article presents the HNC burden in different regions of India. The published population-based cancer registries (PBCRs) data from the National Cancer Registry Programme, Bengaluru, and the Tata Memorial Centre, Mumbai, India, were utilised. The 37 PBCRs were divided into six regions including central, east, north, northeast, west and south. The age-standardised incidence rate of HNC was 25.9 (95% CI 25.7-26.1) and 8.0 (95% CI 7.9-8.1) per 100,000 population, respectively, in males and females. HNC accounted for about 26% of all cancer cases in males and 8% in females. The risk of developing HNC was 1 in 33 for males and 1 in 107 for females. The northeastern registries reported the highest incidence rate 31.7 per 100,000 population in males followed by northern (28.5), central (28.3), western (24.4), southern (23.9) and eastern (18.3). In females, the incidence was in the range of 6.2-10.1 per 100,000 population. For all PBCRs together, the HNC burden was two to three times higher in the age group 60+ as compared to 20-39 years. The HNC burden in India is higher than in the USA, UK, Australia, Africa and Brazil. The PBCRs from the south-east Asia region such as the Colombo district, Sri Lanka, as well as Siraha, Saptari, Dhanusha and Mohattari - Nepal have also reported a high burden of HNC. All regions reported mouth as a leading cancer site followed by tongue, larynx, hypopharynx and tonsil except the northeastern region registries where hypopharynx was the top leading cancer. The burden of other sites of HNC is low. Raising awareness of the disease and associated risk factors, providing early detection services, as well as easy access to diagnosis and treatment are required. The government should focus on building the infrastructure and capacity building to control this disease.

An assessment of childhood cancer care services in India - gaps, challenges and the way forward.

Background: Childhood cancers are emerging as an essential concern in India where there is lack of a specific programme component or policy to address childhood cancer control. There is limited information on the status and quality of childhood cancer care services in India. This paper describes the childhood cancer care services available at secondary and tertiary-level hospitals in India through a cross sectional study design. Methods: The survey was conducted in 137 tertiary-level and 92 secondary-level hospitals in 26 states and 4 Union Territories (UTs), ensuring a uniform representation of public and private care hospitals. The study tool collected data on the organisational infrastructure, type of oncology services, health workforce, equipment, treatment and referral protocols, and treatment guidelines. Descriptive statistics was used to primarily present the health service status and data on childhood cancer care services in proportions and mean. Findings: A dedicated pediatric oncology department was available in 41.6% of the public, 48.6% of private, and 64% Non Government Organization (NGO) managed tertiary-level hospitals. In 36 (39%) of the 92 hospitals providing secondary care, childhood cancer care was provided. The availability of bone (41.5%) and positron emission tomography (PET) scans (25.9%) was lower in public tertiary hospitals, whereas histopathology, computerised tomography (CT scan), and magnetic resonance imaging (MRI) were lower in public secondary hospitals than private and NGO managed hospitals for the corresponding level of care. Most tertiary hospitals had the required supportive care facilities except for play therapy and hospice care. Less than 50% of the public tertiary hospitals had stocks of the four categories of cancer-treating drugs and essential infrastructure for radiotherapy and chemotherapy. Most secondary-level hospitals not treating childhood cancer had referral linkages with tertiary hospitals. Interpretation: The situational analysis of childhood cancer care services in India showed the concentration of availability of childhood cancer care services at the tertiary level of health care. There were gaps in the availability of specialised pediatric oncology care in all the tertiary hospitals. The availability of childhood cancer care services was higher in private and NGO-managed hospitals than in public hospitals. Integration of childhood cancer as a part of the national cancer control response should be taken up as a matter of priority. The need of the hour is to formulate a childhood cancer policy that will enable timely access to care universally. Funding: World Health Organization, India provided funding and technical support.

Role of verbal autopsy in cancer registration: A mixed-methods study from the population-based cancer registry of Northern India.

OBJECTIVES: To describe utilisation of verbal autopsy as one of the data collection approaches in cancer registration in an Indian setting. We aimed to estimate the proportion and epidemiological characteristics of malignancies identified by the Varanasi population-based cancer registry (PBCR) using verbal autopsy between 2017 and 2019 and to develop a thematic network for implementing verbal autopsy. METHODS: This was a cross-sectional mixed-methods study. Quantitative methods were applied to analyse information from PBCR proforma of the verbal autopsy-confirmed cancers; qualitative methods were applied to evaluate verbal autopsy conducted by field staff from key informants. In-depth interviews of field staff for the challenges and potential solutions during verbal autopsy were assessed. RESULTS: Of 6466 registered cancers, 1103 (17.1%) were verbal autopsy-confirmed cancers, which had no other source of information. The majority of verbal autopsy cases were from vulnerable populations who were aged >50 years (721, 65.4%), female (607, 55.1%), from rural backgrounds (853, 77.3%), illiterate or just able to read and write (636, 57.7%), and from lower and middle-income groups (823, 74.6%). Verbal autopsy helped provide information about symptoms and site of disease, diagnostic and treatment details, and disease status. Major challenges during verbal autopsy described by field staff were incomplete cancer treatment, destruction of medical records and non-cooperation by the community and lack of support from the local workforce as cancer is not notifiable. CONCLUSION: Verbal autopsy helped identify cancers that would have been missed during active case finding from available resources. The majority of verbal autopsy-confirmed patients belonged to vulnerable populations. Non-cooperation from community and local health systems was major challenge during verbal autopsy. Developing robust cancer awareness, patient navigation, and social support programmes will strengthen verbal autopsy. Integration of standardised and reproducible methods of verbal autopsy in cancer registry and digitalization of health information, especially in limited-resource settings with weak vital registration, will facilitate completeness in cancer registration.

Application of Rupantaran software to Sri Lankan hospitals: an innovative tool developed to merge population-based cancer registry data into CanReg5.

The purpose of a population-based cancer registry is to provide information on the disease burden for cancer control planning and is essential in studies on assessing the effectiveness of prevention, early detection, screening and cancer care interventions, where implemented. Sri Lanka is one of the Member States of the World Health Organisation's South-East Asia Region and receives technical support for cancer registration from the International Agency for Research on Cancer (IARC), and the IARC Regional Hub based at the Tata Memorial Centre in Mumbai, India. For data management of cancer registry records, Sri Lanka National Cancer Registry (SLNCR) uses the open-source registry software tool, CanReg5, as developed by IARC. The SLNCR has received data from 25 centres located across the country. Inputted data from the respective centres was then exported from various CanReg5 systems to the main centre in Colombo. As the import to the central CanReg5 system held in the capital is manual, the records were manually modified to avoid any duplicate entries, and the quality of data was compromised. To overcome this issue, a new software tool, Rupantaran, has been created and developed by IARC Regional Hub, Mumbai to help merge the records from different centres. Rupantaran was tested and implemented successfully at the SLNCR with 47,402 merged records. The Rupantaran software has proven beneficial in maintaining the quality of cancer registry data by avoiding manual errors, thus enabling rapid analysis and dissemination, a limiting factor previously.

Epidemiology of rare cancers in India and South Asian countries - remembering the forgotten.

Background: Rare cancers (RCs) are challenging to manage and are "forgotten cancers" though they collectively constitute a significant proportion of all cancers (∼20%). As a first step towards streamlining care, there is an unmet need to map the epidemiology of RCs in South Asian Association for Regional Collaboration (SAARC) countries. Methods: The authors collected data from 30 Population-Based Cancer Registries (PBCR) of India and the published national registries of Nepal, Bhutan and Sri Lanka (SL) and compared them with the standard RARECAREnet RC list. Findings: With the standard definition of crude incidence rates (CR) ≤6/100,0000 per population, 67.5%, 68.3%, 62.3% and 37% of all incident cancers qualify as RCs in India, Bhutan, Nepal and SL, respectively. An arbitrary cut-off CR ≤3 appears more appropriate with 43%, 39.5%, 51.8% and 17.2% of cancers identified as RCs, respectively, due to the lower cancer incidence.There are similarities and notable differences between the RC lists of the SAARC region with that of the European RC list. Oral cavity cancers are rare in Europe, while pancreas, rectum, urinary bladder and melanomas are common. In addition, uterine, colon and prostatic cancers are rare in India, Nepal and Bhutan. In SL, thyroid cancer is common. There are gender-related and regional differences in RC trends in the SAARC countries. Interpretation: There is an unmet need in SAARC nations to capture epidemiological nuances in rare cancers. Understanding the unique issues in the developing world may guide policymakers to adopt appropriate measures to improve RC care and tailor public health interventions. Funding: None.