Overview of Rare Disease Registries and U.S. Cancer Registries

Our post yesterday explained work in progress to create a national mesothelioma patient registry. That development should be viewed in the broader context of rare disease registries in general. On that topic, an open access article is Lacaze P,  et al, Rare disease registries: a call to action. Intern Med J. 2017 Sep;47(9):1075-1079. The article is online at this page.  It’s abstract explains:


When registries collect accurate clinical data over time, they can act as fundamental support structures for patients and their families and powerful cost-effective instruments to support clinical trials and translational research to improve quality of care, quality of life and survival. Registries are critical for rare diseases (RD) with low prevalence and propensity for variation in treatment and outcomes. Rare Voices Australia is leading a call for action to the research and clinical community to prioritise RD data collection and develop an integrated RD Registry strategy for Australia. Financial, operational and governance challenges exist for establishing and maintaining RD registries. As a multidisciplinary team whose interests converge on RD, we highlight the need for the establishment of an Australian RD Registry Alliance. This ‘umbrella’ organisation will: (i) bring together existing RD registries across Australia; (ii) establish National RD Registry Standards to support interoperability and cohesion across registries; (iii) develop strategies to attract sustainable funding from government and other sources to maximise the utility of existing RD registries and support the development of new RD registries. The most important role for the Alliance would be to use the RD registries for translational research to address current knowledge gaps about RD and to improve the care for the over 1.4 million Australians estimated to live with RD.”

Regarding U.S. cancer registries in particular, the National Cancer Registrars Association is an umbrella association for national cancer registries. http://www.ncra-usa.org/. Its online materials at this page provide the following overview of cancer registries, as well as briefly reviewing the timeline of federal level efforts to create and fund cancer registries.

“What is a cancer registry? Cancer registries are information systems that manage and analyze data on cancer patients and survivors. Cancer registries can be classified into three general types: hospital registries, the starting point for cancer surveillance, maintain data on all patients. Cases are reported to the central or state cancer registry; central registries that maintain data on all cancer patients within certain geographical areas; and special purpose registries maintain data on a particular type of cancer, such as brain tumors. Together, CDC’s NPCR and NCI’s SEER Programs collect cancer data for 100% of the US population.

What information is included in the cancer registry? Cancer registrars collect a wide range of demographic and medical information: patient history (physical findings, screening information, occupation, and history of a previous cancer); diagnostic results; cancer information (primary site, cell type, stage of disease, biomarkers, and other prognostic indicators); treatment; and follow-up (recurrence and cancer status).

 What is the history of cancer registries? In 1971, the National Cancer Act budgeted monies to the National Cancer Institute (NCI) for research, detection and treatment of cancer and, in 1973, the Surveillance, Epidemiology and End Results (SEER) Program of NCI established the first national cancer registry. In 1992, through the Cancer Registries Amendment Act, Congress established a National Program of Cancer Registries (NPCR). The legislation authorized the Centers for Disease Control and Prevention (CDC) to provide funds to states and territories to enhance existing cancer registries and to plan and implement registries.

The association also provides a helpful two page hypothetical “case study” summary of a patient’s typical interaction with a cancer registry.