The people and the cancer registries

Questions Deepening
• What does "registration of a cancer" mean?
• Why is it necessary to register cancers?
• What kind of  information is being collected about me?
• Is there something I must do?
• Who keeps this information?
• Will someone contact me?
• If registries have been active for 30 years, why only now is the information available to those suffering from cancer?
• Why is it necessary to register the patient's name?
• Why isn't the health service number used instead of the name and address?
• Do the registries supply identifying data?
• For what purpose is the data collected by registries used?
• What are the benefits of registering data about cancer?

Download this document (pdf Italian Version in Italian).

NB:This document is based on a similar leaflet published by the National Health Service (NHS), taking into account that functions, procedures and registration rules followed by the Italian cancer registries are different.


Questions

 

What does "registration of a cancer" mean?
When a cancer is diagnosed, the treating doctor or other medical staff record the most important details of the case. This is done for all patients, including the young. The information is found in the patients’ clinical records and hospital discharge notes, in death certificates and in anatomical pathologists’ reports (pathologists’ examinations help in understanding the treated cancer). Treating doctors and hospitals are authorized by the regional health service to pass the information to the local cancer registry.
Once the data has been received, the cancer registry reconstructs the history of each case and keeps it updated (for example, following patients if they move to another hospital, develop another cancer or recover).

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Why is it necessary to register cancers?
Registration is the only way of knowing how many people resident in a particular area have cancer and the type of cancer they have. Many countries of the world have a network of cancer registries. The information registered is essential for cancer research enabling study of the causes of some cancers, an estimation of the possible impact of social and environmental factors and an assessment of the efficacy of prevention and screening programmes. By understanding the trends of neoplastic diseases in Italy, registries provide a useful tool for the national health service and the improvement of its services.

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What kind of information is being collected about me?
The cancer registries need to know some details of the person registered – the name, address, age and sex. This detail helps give greater precision in the recording of clinical data, and above all the correct attribution of an individual patient's data coming from different sources. In the absence of this essential personal data it would not be possible to combine all the clinical data of an individual patient, and there would be a risk of duplicating cases and, therefore, of reporting more cancers than exist in reality. In addition to these details it is necessary to know the type of cancer, the clinical circumstances in which it was discovered and the treatment given or being received. This information helps to determine possible causes for cancer and to identify the best therapies.

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Is there something I must do?
No, the patient does nothing: there is no form to fill in and nothing to sign. Your doctor or hospital will forward the necessary information to the local cancer registry following a procedure established by your regional health authority.

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Who keeps this information?
The cancer registries treat this information according to strict data protection and privacy laws governing the acquisition of personal data and the people who use it. It is held in strict confidence, and only registry staff are allowed access. The reports that are regularly published by the cancer registries are not allowed to reveal the names of individuals.

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Will someone contact me?
No. None of the cancer registries are authorised to contact a patient directly. Sometimes, under defined conditions of use, information is released to reseachers who have obtained special permission from the ethics committee or regional health authority. Authorised researchers will only contact a patient with the approval of the treating doctor and / or, in some cases, the local ethics committee.

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If registries have been active for 30 years, why only now is the information available to those suffering from cancer?
It is true that some cancer registries have been active for 30 years, but before the introduction, in Italy, of the privacy law (law 675 / 1996, renewal of legislative decree 196 / 2003) the health system had not reflected on the issue of the treatment of sensitive data. Ever since the requirement for a patient’s consent to subject him or her to a diagnostic or therapeutic procedure, registries have felt the need to give information on the treatment of data.

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Deepening

Why is it necessary to register data by name?
There are several reasons:

  • Patients often refer to more than one doctor and more than one hospital. It is important to know that cancers reported by a number of different hospitals refer, in effect, to the same person, otherwise the registrations would be duplicates and the incidence count of the cancer would be higher.
  • An important indicator of the efficacy of treatment is the percentage of patients who survive the illness. It would not be possible to cross-check the death data without the name of the person.
  • People often want to know if there is a heightened risk of cancer in their own residential area. This risk cannot be investigated properly without knowing addresses.
  • People are often worried that a history of cancer in their family can confer an elevated risk of cancer. The accurate re-construction of family histories (work done by the registries) is indispensible in providing appropriate information.

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Why isn't the health service number used instead of the name and address?
The cancer registries, in fact, use the health service number or tax code to cross-check records whenever possible. This data, though, is not always reported in medical documents, and so if used for registration would result in incomplete data because some people could not be registered. Furthermore, the health service number is prone to transcription error which could lead to inexact data and the possibilities of duplication and untraceable information.

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Do the registries supply data by name?
The cancer registries generally do not supply data by name. They do supply, for well-justified requests from specific institutions and national and international publications, aggregated data without identifying information. Subject to the consideration of the registry director and approval by the ethics committee, the registry can supply identifying information to specified researchers for particular research purposes described in detail in a project that lays out the specific aims of the research.

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For what purpose is the data collected by registries used?
The main purposes of registries are:

  • To monitor incidence, prevalence and survival trends of cancer over the course of time in different geographical areas and social classes.
  • To assess the efficacy of cancer prevention and screening programmes.
  • To assess, by providing comparative data, the quality and results of the diagnosis and treatment of cancer.
  • To estimate the impact of environmental and social factors on the risk of cancer. For example, the data is used to study possible risks associated with smoking, poor nourishment, environmental pollution (such as, electric power lines, mobile phones, dumped waste and so on).
  • To investigate the differences in incidence, survival and access to treatments among the social classes, and so contribute to programmes designed to reduce inequality.
  • To support research in to the causes of cancer.
  • To furnish information supporting genetic counselling services who counsel individuals and families at heightened risk of developing cancer.

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What are the benefits of cancer registration?
Some examples of the information coming from the work of the registries are listed below.

  • The incidence of cancer in Italy is rising.
  • Survival is improving but there are differences between the north and south of the country.
  • The survival of babies has greatly improved in recent years.
  • There has been an improvement in the treatment of cancer in the areas covering by screening programmes (for example, fewer invasive interventions in women that undergo screening tests).
  • The numbers of melanoma of the skin are increasing year by year.
  • Mesothelioma is caused by exposure to asbestos.

The following are some examples of the information that would not be available without the work of the registries:

  • The numbers of incident cancers per year, and which are most frequent.
  • The trends of incidence rate and survival.
  • The comparison of incidence rates and survival with that of other countries.

And without the work of the registries it would not be possible to determine the following:

  • If the socio-economic inequality in treatment and survival has been reduced.
  • If screening programmes are efficient.
  • If a person living close to a rubbish tip or electric power lines has a greater risk of cancer.
  • If the risk of developing specific cancers is greater in any professional groups.

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