Aims & Objectives
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What are the aims and expected outputs of the RARECARE project?

Aims:

  • To provide an operational definition of “rare cancers”, and a list of cancers that meet this definition
  • To estimate the burden of rare cancers in Europe
  • To improve the quality of data on rare cancers
  • To develop strategies and mechanisms for the diffusion of information among all the key players involved in Europe-wide surveillance on and treatment of rare cancers
Results:
  • Incidence, survival, prevalence and mortality for all rare cancers will be estimated
  • Data quality will be analysed for a subset of cancers, by confirming the diagnostic data and, if possible, analysing additional data on stage and treatment
  • A web-site on rare cancers will be designed to disseminate the results of the project, and in particular, to inform clinicians, patients and health planners

How the specific objectives will be pursued?

Photo of the RARECARE management
RARECARE Management
Definition of rare cancer.
Frequency and clinical characteristics will be jointly considered in developing a definition that addresses the disparate requirements of clinical decision-making, clinical research, the organisation of health care services and the registration of new drugs. The proposed definition must attain a wide consensus among all interested parties in Europe.

List of rare cancers.
The list of rare cancers will flow directly from the new definition of rare cancers, and from a consensus of interested professional and lay opinion, including EMEA, which has a major interest in orphan drugs. The list will be presented both in the format of the International Classification of Diseases for Oncology (ICD-O-3) topography and morphology codes, and as a list of commonly accepted names or synonyms.

Estimation of indicators.
Incidence, survival, prevalence and mortality for each group of rare cancers will be produce by country and/or region, and for Europe as a whole, using data provided by a network of population-based cancer registries. At the moment the registries involved in the RARECARE project cover 22 countries (Austria, Belgium, Croatia, the Czech Republic, Estonia, Finland, France, Germany, Iceland, Ireland, Italy, Malta, the Netherlands, Norway, Poland, Portugal, Slovakia, Slovenia, Spain, Sweden, Switzerland and the UK).
Macro indicators related to health care system will be collected and the relation with rare cancer epidemiological data will be analysed.

Data quality and comparability of cancer registry data.
A selected sub-group of rare cancers will be defined on the basis of clinical relevance. For this selected group, an evaluation of data quality will be carried out, using quality checks designed specifically for rare cancers. Completeness of incidence registration, standardisation of coding practices and the definition of disease (accuracy of diagnosis) will be considered as major problems to be addressed. For these selected rare cancers, we will also test the feasibility of cancer registries collecting information on stage at diagnosis, type of treatment and place of treatment.

Dissemination of the results.
The diffusion of information on rare cancers in Europe will be carefully considered by scientific publications, contributions to scientific meetings.
Both the estimated indicators of burden and the rare cancer definition and list will be presented at the meeting of the relevant national and international association. A publication plan for the scientific journal will be soon available.
Special effort will be devoted to privilege the communication with the EMEA and the advocacy groups.

Evaluation of the project.
An Advisory Board supervises the project. The Advisory Board comprises a small group of persons who are both interested in the subject and committed to the success of the project, and who bring special expertise to evaluation of its progress. In particular, the Advisory Board will be asked to provide insights into the overall implications of the project, both for cancer patients, for clinical practice, for national health care policy, and for public health policy at the level of the European Union. Any guidance offered by Advisory Board members on these topics will be, to the extent possible, incorporated into the activities of RARECARE, and into the dissemination of the results of the project.

Each of the above objectives is managed in a specific work package.