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SUCCESS STORY: CARPHA Shines the Spotlight on Cancer in the Caribbean

SUCCESS STORY: CARPHA Shines the Spotlight on Cancer in the Caribbean

Cancer is the second cause of death in the Caribbean. The high costs of cancer care and treatment impact negatively on the economies of our countries. Often, there are poor outcomes for patients, due to late presentation and diagnosis. Good quality data needed to understand the burden of cancer in the Caribbean, is widely lacking; less than five Caribbean countries have reliable cancer data.

Led by CARPHA, a unique international collaboration, was started to improve the availability and quality of cancer data in the region. With support from the International Agency for Research on Cancer (IARC), The United States National Cancer Institute (NCI/NIH), The North American Association of Central Cancer Registries (NAACCR) and the US Centers for Disease Control and Prevention (US CDC), the Caribbean Cancer Registry Hub (The Hub), based at CARPHA,  began operations in 2015 and, was launched in 2018.

Through the Hub’s work, Ministries of Health, and cancer registries in CARPHA Member States have benefitted from advocacy, technical support, training, and capacity building for strengthening cancer registration. This has contributed to an improvement in the availability and quality of cancer data, needed to support decision making for improving cancer prevention and control in the Caribbean.

“..when you don’t have the numbers you can’t really guide the hospital executives and the Ministry of Health to make investments that would ensure that we could tackle the primary diagnoses and why we are diagnosing so late and why we have so much mortality related to certain cancers…we were looking at a cancer registry which is extremely important and the base for all of our decisions… CARPHA and the Caribbean Hub gives you all of the support you need… what seemed to be an impossible project here in the BVI within a few months we had everything that we needed and all it took was a phone call…the support that the (Caribbean) Hub can give you is more than 100%”

- Dr Elizabeth dos Santos, Consultant Medical Oncologist, British Virgin Islands/ Chair, Eastern Caribbean Diagnostic Oncology Network (EC-DON), May 12 2020

The Caribbean Cancer Registry Hub completed assessments of cancer registration in 7 countries, built capacity for cancer registration in 13 countries, provided technical assistance for cancer registration software in 8 countries and conducted data quality assessments in 2 countries. Standard Operating Procedures for cancer registration are now available for standardizing cancer registration in Member States. Ten countries have been trained and 7 adopted the guidelines in their cancer registries. Presentations on activities to strengthen cancer registration in the Caribbean have been made at 8 regional and international conferences. The Hub conducted research and published 4 scientific papers in peer-reviewed journals. Four IARC-trained Cancer Registration Experts are now available in the region.

Through the work of the Hub, Caribbean countries are better equipped to strengthen cancer registration. This is a critical step towards supporting evidence informed decisions for reducing the cancer burden and improving cancer prevention and control in the region.

 

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