Cancer registration is a system that today forms the basis of the "Cancer Control Program" in all countries of the world.
The aim of this system is to provide epidemiological statistics and information related to cancer. This information will cause the correct identification of the priorities in the national and global cancer control programs, and without this important system, evaluating the prevalence of cancer as well as the effectiveness of world health policies in the field of cancer control remains incomplete, and failure to create and implement it, will lead to the loss of much of the investments for coping with cancer.
While "Cancer Control Program" has become one of the main priorities of the World Health Organization today, the number of cancer victims is growing steadily. Cancer, only in 2015, caused the deaths of more than 8.7 million people.
The International Agency for Cancer Research, in its 2018 report on 36 types of cancer in 185 countries, estimated that the world has faced more than 18 million new cases of cancer, of which 9 million will result in death. According to this report, one-fifth of men and one-sixth of women have been diagnosed with cancer during their lives.
In Iran, in 2015, 385000 deaths occurred, of which 12.8% (about 49000 deaths in both males and females) were due to cancers. This figure compared to 25 years ago (24000 cases in 1990) has been nearly doubled. Although the average incidence of cancer and its deaths in Iran is still lower than the world average (the average annual incidence of cancer in the world is 182 per 100 000 people, in European countries, 267 per 100 000 people, and in America, 318 per 100 000 people), the average annual incidence of cancer in Iran is 158 per 100 000 people.
How does the global cancer control program run?
How can the Cancer Control Program, which is on the agenda of healthcare policymakers in many advanced countries and some developing countries, be implemented to give promising results?
The World Health Organization considers the "Population-based Cancer Registration System" as the most essential infrastructure for "Cancer Control Program". "Population-based Cancer Registration" is a complex and massive system that includes collecting, storing and analyzing data from cancer patients in a region and a specific population. Population-based Cancer Registration collects cancer data from hospital and non-hospital sources in a specific geographic area to track the trend of the incidence of cancer in different areas, over time and among demographic groups, to make the incidence of cancer in that area calculable.
Cancer registration system information, in addition to effective helping to determine the priorities of the Cancer Control Program and assessing the effectiveness of this program that includes prevention, early diagnosis, treatment and provision of palliative cares to all patients, also has many applications in epidemiological and clinical cancer investigations.
The history of cancer registration in the world
Cancer registration in the world was recognized as an effective tool to prevent and control cancer in 1930. The first population-based cancer registration group performed from data of countries in Hamburg (1927), New York (1940), Connecticut (1941) and Denmark (1942). The first population-based cancer registration conference was held in 1946 and presented several ideas to the World Health Organization to support the establishment of a national and international cancer registration, and emphasized the usefulness of data related to cancer patients, structuring data in a systematic manner, and the establishment of an international headquarters for national and international cancer registration.
In 1950, the World Health Organization created committees to support the cancer registration program, and in 1966, the International Agency for Research on Cancer (IARC) began its work. Also In 1966, the International Cancer Society was established and published the first World Cancer Report in five continents. Today, there are 200 cancer registration centers in the world, but the population coverage of different parts of the world is significantly different, so that 99% of the North American population is exposed to cancer.
The history of cancer registration in Iran
The first steps to register cancer in Iran have been taken since the 1950s. In 1955, the first cancer institute was established at Tehran University of Medical Sciences. The first cancer registration data from Iran was published by Dr. Habibi in 1956. This report contained data from 1945 to 1956. According to this report, the incidence of cancer in the south was 28 per 100,000 people and in the north was 42 per 100,000 people.
In 1969, the high incidence of esophageal cancer in northern Iran (around the Caspian Sea) drew the attention of the international researchers, and the first population-based cancer registration in this region was jointly conducted by the Tehran University and the International Agency for Research on Cancer in Babol, Mazandaran province, on the Caspian coast, and then expanded to Gilan.
According to this cancer registration data, Mahboubi and his colleagues reported that the incidence of esophageal cancer in the Golestan province was very high (100 per 100,000 people), particularly, the incidence was higher among Torkaman people (109 per 100,000 men and 174 per 100,000 women).
In 1968, cancer registration started its work in Fars province. This cancer registration collected data on all cases of cancer in Shiraz, in the south of the country.
However, all these efforts were stopped in the early 1980s with the onset of socio-political events in Iran, including the revolution and the war with Iraq.
Approval of the law on "mandatory registration and reporting of cancer diseases" in parliament
In 1984, the law on mandatory registration and reporting of cancer diseases was approved by the Islamic Consultative Parliament. The purpose of this law was to promote conducting epidemiological research, implement regional preventive programs and extract statistical data on cancer patients. The cancer control department of the Ministry of Health was responsible for this, which ultimately led to incomplete results due to the lack of complete coverage of cases of cancer and the low number of cases.
Newer steps in cancer registration with the study of esophageal and gastric cancers in northern Iran
The onset of population-based cancer registration for esophagus and gastric cancers in northern Iran
Despite the incomplete results of the early steps of cancer registration associated with the Ministry of Health, the registration system of this disease in Iran witnessed newer steps by implementing a population-based cancer registration system in Ardebil and Golestan for conducting the study of esophageal and gastric cancers in northern Iran (Gastro Esophageal Malignancy in the North of Iran).
The efforts of Dr Reza Malekzadeh, supervisor of the study "Gastro Esophageal Malignancy in the North of Iran", to the cancer registration system in the 1370s
Dr Reza Malekzadeh meeting Dr Dmax Parkin, director of the World Health Organization's cancer registration system for establishing cancer registration system in Ardebil and Golestan
The population-based cancer registration system in Ardebil and Golestan, in spite of the serious challenges posed especially by the Ministry of Health's Deputy to establish this system, was created by Dr Reza Malekzadeh, the head of the Digestive Diseases Research Institute of Tehran University of Medical Sciences, with the effective and broad collaboration of researchers from Tehran, Ardebil, Mazandaran, Golestan and Gilan Universities of Medical Sciences, international researchers particularly Dr Dmax Parkin, director of the World Health Organization's cancer registration system, and with the efforts of many local authorities in Golestan and Ardebil provinces during 1994 (1373) through 1995 (1374); so that several articles from the cancer registration in the study of esophageal and gastric cancers in northern Iran which was the introduction to the Golestan large cohort study (the study of the causes of esophageal cancer prevalence and incidence in northeastern Iran), along with other articles related to cancer registrations in Iran were later cited in Globocan (Global Cancer Registration Report).
The Global Cancer Report was a comprehensive report on the state of the cancer in the world, a newer version of which was published by the International Agency for Cancer Research in 2010.
Population-based cancer registration in Golestan and an important evolution in Iran's cancer registration system
The next step that helped a lot to stabilize the cancer registration system in Iran was the Golestan large cohort study (the largest cohort study in the Middle East and North Africa) conducted by Dr Reza Malekzadeh, the head of the Digestive Diseases Research Institute of Tehran University of Medical Sciences, and a team of researchers from Tehran and Golestan Universities of Medical Sciences, and effective international collaborations.
This large study of 50,000 people which evaluated the causes of incidence and prevalence of esophageal cancer in Golestan province as the region with the highest incidence of esophageal cancer in the world, with major national and international achievements, required a more systematic cancer registration introductory program. Accordingly, in 1385, the Golestan population-based cancer registration program was initiated in Golestan University of Medical Sciences as a basic prerequisite for conducting the Golestan cohort study and was able to provide a successful model for implementation of cancer registration based on the entire Iran population.
Dr. Alireza Sajadi, executive director of cancer registration in North of Iran
and Dr Gholamreza Roshandel, executive director of the Golestan cancer registration and cancer registration national program
Implementation of the first cancer registration national program in Iran
Finally, with the nationwide cancer registration in all of Iran's provinces in 1393, the first cancer registration report based on the entire population of Iran was prepared.
Iran's efforts to provide the first total population-based cancer registration report was extremely effective and resultful that due to its accuracy and high quality this report was approved for publication in the "Cancer Registration in Five Continents" reference as the most reliable cancer registration global reference affiliated to the World Health Organization.
This happened while cancer registration in Iran, like other developing countries, always encountered many limitations, difficulties and deficiencies. For example, while around 70% of all cancer cases in the world are occurring in developing countries, most population-based cancer registration systems are in developed countries, and few are in developing countries. On the other hand, unfortunately, most of the cancer registration systems in developing countries collect the information needed to investigate cancer cases with very low quality.
Research has shown that most developing countries use registration systems based on laboratory (pathology) data to run a population-based cancer registration program, which leads to the undercounting of cancer cases; meanwhile, efficient population-based cancer registration systems, in addition to collecting laboratory data, also collect patients' clinical data and death information.
In the recent report on population-based cancer registration in Iran, this important guideline has been observed. Another important point in the "population-based cancer registration" report was the high population coverage (98%) to evaluate and register the cancer cases. This issue is also considered very important in accurate recording of cancer statistics. In developed countries, the proportion of covered population is higher than developing countries. For example, population coverage in the United States is 99 percent, in Australia and New Zealand is 86 percent, and in the European Union is 57 percent; while coverage in South and Central America is only 21 percent, and in African and Asian countries, 11 percent and 8 percent respectively.
With the successful implementation of the first Iranian total population-based cancer registration, which was the result of the efforts of many medical sciences researchers and executive managers at the Ministry of Health, many hopes have been created for early diagnosis and treatment of cancer and better control of this disease, and some steps have been taken to sustain the presentation of reliable data to credible cancer registration authorities in the world.
The Digestive Diseases Research Institute of Tehran University of Medical Sciences, as the conductor of the study of esophageal and gastric cancer in northern Iran and the Golestan cohort study, and also as one of the main contributors to the "First Cancer Registration Report Based on the Total Population of Iran", which has been implemented in cooperation with medical universities throughout the country and approved by the World Health Organization's most authoritative global reference "Cancer In Five Continents" for publication, is one of the pillars of the cancer registry system in Iran which has played an essential role in establishing and leading a cancer registration system in Iran.
According to the mentioned important requirements, "Cancer Registration" group of the Digestive Diseases Research Institute of Tehran University of Medical Sciences has been formed with the aim of helping to generate epidemiologic information related to cancer registration and also creating more accurate policies to deal with this disease in Iran's health system, particularly the cancer registration system, and has implemented several activities in this field.