Designing a Minimum Data Set for Breast Cancer: a Starting Point for Breast Cancer Registration in Iran

BACKGROUND: Due to the high incidence of deaths from breast cancer, high cost of treatment and limited resources, the need to formulate and implement effective programs in reducing the burden of disease is obvious. Care, control and creation of cancer information system having an infrastructure from collection of minimum data sets (MDS) are the top priorities of research in Iran’s Ministry of Health. METHODS: This is an applied descriptive research with comparative approach implemented in 2010. MDS for breast cancer on selected countries were searched and reviewed and proposed model based on the country’s need was designed. Research data were implemented in 2 stages; assessment of MDS on selected countries and the validation of the proposed model through several meetings that has been carried out by the Undersecretary for Research and Technology and several oncologists and pathologists. RESULTS: The MDS is composed of 11 parameters in the form of fields in closed structured arrangements with consideration to coding responses. These parameters include: hospital data, demography, referral, physical examination and investigation, diagnostic information, pathology, treatment, palliative care, completion of primary treatment, clinical trials and follow-up. This form is available for use in the cancer registry database. CONCLUSION: MDS provides an opportunity to strengthen communication between performed researches and research results for the improvement of programs, policies and strategies and provides positive effect on equality in the health system. Although the stages of creating the MDS for breast cancer has been successful, but many challenges has been met until its completion.