2.3 Disease registry surveillance

Registry surveillance is central to monitoring on some forms of non-communicable diseases in many countries. Disease registries have been used since the 1800s and are most commonly used for cancers. In the field of healthcare, a registry is defined as ‘a file of data concerning all cases of a particular disease or other health-relevant condition in a defined population such that the cases can be related to a population base’ (Last, 2001). A substantial amount of work is needed to maintain a complete disease registry of all known cases, so registries are typically only used for relatively rare and clearly defined diseases. When data in a registry is later used for public health purposes, this can be termed registry surveillance. Registry data can be used to inform on the incidence and prevalence of a specific disease or health condition, such as specific forms of cancer or to assess the effectiveness of interventions, including treatments, to reduce disease prevalence.

Example: The NCRP in India is a national cancer registry which has been operational since 1964. Given that 80% of the burden of new cancer cases worldwide falls on low- and middle-income countries (LMIC) such as India, such registries play an important role worldwide in providing data to support cancer-reduction strategies. Data on a clinical diagnosis of cancer, a laboratory sample confirmation of the presence of cancer (coded using the ICD-O), and deaths attributable to cancer are collected. In India, specialist surveillance staff who work for the NCRP regularly visit hospital oncology departments, pathology laboratories, municipal record buildings and scrutinise records to actively seek out the data required. A standardised questionnaire, known as the ‘common core proforma’, is then filled out. Data collected include personal identifiers, demographic variables, dates of diagnosis, tumour site and morphology details, extent of disease and treatment(s) given up to six months after diagnosis, and deaths due to cancer. If you wish, you can read more information about the NCRP [Tip: hold Ctrl and click a link to open it in a new tab. (Hide tip)] .

The examples above are not exhaustive, but they illustrate the wide variety of surveillance systems that are used to collect health information from human and animal populations around the world.