Identifying and understanding what could be causing any enduring condition is very important to help treat it. This is the point where disorders and diseases differ. Disorders are unwanted conditions where the underlying cause cannot be interpreted. Take into consideration that, alcoholism is a disorder because one cannot perceive as to why the individual is addicted to alcohol leading to alcohol abuse. But cancer is classed as a disease because one can pinpoint the root of the condition and identify the different tumors that are causing the varied symptoms. Cancer registry makes it less difficult to unravel the different cancers that are adding to the burden of diseases in India.
It is estimated that around 28 lakh cases of cancer are prevalent at any given point of time in India, with 12.5 lakh new diagnosed cases emerging every year. This enumeration of cancer cases is brought to notice, casting light on the increasing prevalence, by the data collected through cancer registries. Cancer registries are important for measuring the incidences of the disease around the country and providing unambiguous data on the causes and types of cancer proliferating in the country and around the world.
What is Cancer Registration?
It is a series of measures taken in order to continuously and systematically collect information on the different neoplasms (tumors) causing cancer. It also involves the process of classifying the information collected on all cancer cases to produce statistics and provide a framework for recognizing a case of cancer, as well as planning on how to control the repercussions of cancer on the community.
National Cancer Registry Programmer
The Indian Council of Medical Research (ICMR) has listed its agenda and commenced its objectives of Cancer registrations by instrumenting the National Cancer Registry Programmer (NCRP) since December 1981.
The main objectives that were set down for the programmer are
1. Generating authentic data on the magnitude and patterns of cancer cases in India,
2. Undertaking epidemiological investigations based on cancer registry data and put forth control measures,
3. Assist in designing, planning, evaluating and monitoring the cancer control activities under the National Cancer Control Programmer (NCCP),
4. Developing training programmer for cancer registrations, promote human resource development and cancer epidemiology. Knowledge of this assists in recognizing the set of causes (etiology), decide on and direct the cancer control measures and also to examine the outcomes of the measures taken.
Knowledge of this assists in recognizing the set of causes (etiology), decide on and direct the cancer control measures and also to examine the outcomes of the measures taken.
Atlas of Cancer in India
Development of an Atlas of Cancer in India is a project initiated and launched by the NCRP. The main objective of this project is to acquire an accurate overview of patterns of cancer so as to identify the similarities and differences in the patterns (in different parts of the country) and also to estimate the cancer incidences.
Types of Cancer Registries
Broadly there are two types of cancer registries:
a) hospital based and b) population based.
To establish the aforementioned objectives of NCRP, three hospital-based cancer registries (HBCRs) at Chandigarh, Dibrugarh and Thiruvananthapuram, and three population-based cancer registries (PBCRs) at Bangalore, Chennai and Mumbai were initiated from January 1, 1982. These registries provide information on the common cancers in India, variation of cancer occurrences geographically and nature of the cancer for effective measures to control the same.
1. Population Based Cancer Registry (PBCR) The basic purpose of PBCR is to generate data based on cancer prevalence in a community. It works on providing data on incidences and mortality as well as its variations. The data based on incidences in community also contributes to epidemiological studies.
2. Hospital Based Cancer Registry (HBCR) Its primary purpose is to provide care to patients by making use of the readily accessible information through the data entries. This data registered can also be used for clinical research to evaluate efficacy of therapy and epidemiological purposes.
Methodology of Cancer Registration
The fundamental method of registering cancer is seemingly easy to understand, just that the approach slightly differs for the developed countries and developing nations. In developed countries, notifications of cancer cases are made compulsory for every hospital, facilitating the record of data entries for PBCRs as well. However, in developing nations such as India, entry of data is passive bifurcating in two modes of collection - hospital based and population based. The reason being the provision of information is on voluntary basis. Hospitals extract the individual data, abstract the information collectively on a standard document and then forward it to the registries. Also, trained and dedicated personnel are invested for summarizing the data and abstracting the records missing with the hospitals, clarifying the incomplete or contradictory information and then providing the data in the registries. Thus, data is collected either from the hospital records or through personal interview of the patients. In underdeveloped or rural areas of the country where there is lack of diagnostic facilities, the latter approach of data collection is used. That is, a periodic survey is carried out noting down the cancer occurrences, the registration number of health care agencies attended (for geographical statistics), as well as the outcome.
Necessary Information to be Collected for Cancer Registration
Collection of information takes place depending on the objective, requirement and mode of registration. PBCR and HBCR have different objectives for cancer registrations. HBCR focuses on studying the survival rate, understanding and recording the different modalities for different cancers and their diagnosis and treatment. Whereas PBCR is more inclined towards calculating the incidence rates and prevalence both geographically and all over the country. The basic information that is required for cancer registration includes personal identification, demographic characteristics, date and most valid basis of diagnosis, site and morphology of tumor and also verification of the source of information.
The various information that are collected for survey based on PBCR and HBCR are listed below.
Importance of Cancer Registry
The usefulness of the data obtained from these cancer registries helps to rein the increasing incidences of cancer in the world. The meticulous data mining for information from hospitals and communities also helps
in research and to define the extent and common sites of origin. It also helps to determine the manifestations observed for different types of cancer thus helping to identify the condition and initiating pre-planned treatment immediately for combating the disease.
History of Cancer Registration in India
In the tradition of research, India has long been in the field of cancer epidemiology, the oldest cancer registry recorded in 1963 when ICS (Indian Cancer Society) was established in Bombay. Up till 1982, the registry had provided the data from the following cities - Aurangabad (year 1978), Ahmedabad and Nagpur (year 1980) and Pune (year 1973). Epidemiological research then accelerated with the commencement of NCRP in 1982.
Cancer registries under NCRP in the year 1997 had recorded natural incidences ranging 52.9 to 81.5 per 100,000 men and 56.8 to 95.6 per 100,000 women in the urban population. Also, an age standardized incidence rate was established exhibiting "map not to scale range from 81.8 to 122.8 per 100,000 men and from 93.5 to 137.7 per 100,000 women. Crude incidence rate was also calculated for rural area, Barsha (Maharashtra). Natural incidences recorded were 32.6 per 100,000 men and 42.9 per 100,000 women. Whereas age wise incidences were 38.2 per 100,000 men and 49.8 per 100,000 women.
Cancer in India
The most common Cancer incidences in India observed when compared to global incidences were those of the oral cavity, pharynx and cervix. According to a 2001 report, of all the cases, half of those reported in men and one fifth in women were caused due to tobacco use. In women, cervical followed by breast cancer, esophagus, ovary, stomach and gall bladder are common. In men, the most commonly occurring cancer cases are of head and neck, followed by lung and stomach which are distributed geographically in the country.
Cancer registry programmer is an initiative for assessing public health and finding measures to improve the quality of life. With this perception, the edge of the programmer will keep expanding across the country for data mining for registrations and cover more areas which are yet to be covered. The achievements which was made possible by cancer registration involved research which showed different types of breast cancer, monitoring the extent of cancer and help promote noted prevention campaigns, in improving cancer screening programmers, to reinforce the importance of finding ways to get patients diagnosed early. Although it has achieved milestones in understanding cancer but yet progress is required for people who are yet to acknowledge the knowledge.
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