Description of Session
Abstract The National Cancer Control Program (NCCP) maintains the Sri Lanka Cancer Registry (SLCR). This registry contains socio-demographic, histologic and some staging data on cancers. Currently, there is no systematic process to gather outcome data of any cancer in Sri Lanka. The National Cancer Institute, Sri Lanka (NCISL) is the only dedicated cancer hospital in the country. This provides a unique opportunity to create an inception cohort that can be studied and followed up over an extended period. Our objective is to create an inception cohort of patients to study the patterns of cancer care at the NCISL. Detailed information on patient demographics, cancer diagnosis, treatment delivery, outcomes, comorbidities and health-seeking behaviour is captured using an electronic database. This database was developed based on District Hospital Information System (DHIS 2) software platform. Standard protocols are adhered to ensure data security. To ensure reliable and valid data capture the data abstractors were trained by board-certified physicians. Approximately 2900 patients with breast cancer and 800 patients with colorectal cancer have been collected both prospectively (February 1st 2018 to June 30th, 2019) and retrospectively (January 1st, 2016 to June 30th, 2019) with planned prospective follow-up for all patients at 6-month intervals. Future for the data repository includes coverage of cancers beyond breast and colorectal, expansion to include data from other public cancer treatment centres and linkage to the SLCR. This cancer care registry has the potential to form the cornerstone of cancer plans in Sri Lanka and to inform the delivery of care and health policy decision-making enriching the SLCR. For instance, this will facilitate an understanding of how new expensive anti-cancer therapies are being delivered in a low resource setting and whether the outcomes achieved are as expected.
