1. NAACCR /IACR Combined Annual Conference
June 11 – 13, 2019, Vancouver, BC, Canada
Implementing a sub-regional virtual cancer registry to support cancer registration in 10 Caribbean Countries
Sarah Crooks
Programme Coordinator
IARC Caribbean Cancer Registry Hub
Caribbean Public Health Agency (CARPHA)
Trinidad and Tobago

2. The IARC Caribbean Cancer Registry Hub
One of six regional IARC Hubs worldwide
Became operational in 2015
Based at the Caribbean Public Health Agency (CARPHA), in Port of Spain, Trinidad & Tobago
Operations managed by 3 CARPHA staff members with technical and financial support provided by multiple partners (NCI, NAACCR, IARC, CDC, PAHO)
MISSION: To improve the availability, use and dissemination of high-quality cancer data to inform cancer control in the Caribbean region

3. Organization of Eastern Caribbean States (OECS)
International Inter-governmental Organisation
Formed in 1981 with 7 Eastern Caribbean countries
Now a twelve-member grouping of islands
Established political and economic ties
In 2016, OECS Heads of Government established the OECS Health Unit
In the 2017 Fort de France Declaration the OECS Health Ministers committed to joint approaches in health.

4. PBCR
There are 7 Founding Members, 4 Associate Members and 1 Member with Observer Status only. Population sizes vary from ≥5,000 in Montserrat to ~400,000 in Guadeloupe.
Martinique, an overseas region of France and one of the largest members with a population of is the only member with a high-quality population-based cancer registry which captures roughly 1650 incident cancer cases annually

5. The Challenge The Proposal
Very limited data available on the burden of cancer in the OECS. Several OECS countries have attempted to or have had a desire to establish independent cancer registries.
Progress has been limited due to insufficient resources for implementing and sustaining such registries.
The Proposal
A regional cancer registry network and system is being proposed as an innovative and cost-effective solution, to enable data capture , reporting and facilitate use of cancer surveillance data from all OECS countries for cancer control planning.
This approach aims to strengthen existing in-country cancer registration activities and enable data abstraction and reporting of cancer incidence from countries within the OECS with no current cancer registration.
The proposal was developed collaboratively between the IARC Caribbean Cancer Registry Hub and the OECS Health unit

6. Key features of the proposed approach
A central, secure server and reporting network to be established to house all data reported. Assured confidentiality of data.
A core data set can either be reported periodically from a country PBCR or on an ongoing, case-by-case basis as data are abstracted in a country with no PBCR
Each reporting country will have secure remote access to all data submitted
A phased approach: countries being asked to join based on interest and dedicated resources to ensure sustainability
External requests for access to the database will need to be reviewed and approved by an appointed committee
Key features of the proposed approach
Shared infrastructure would be used to host the registry, with on-site data abstraction in participating countries and secure, virtual reporting of data to country-specific databases hosted within the shared registry. The IARC Caribbean Cancer Registry Hub would provide technical support.

7. Key Requirements
Advocacy and networking with key stakeholder within the OECS
Capacity building in-country on recommended Standard Operating Procedures (SOP) and data abstraction (for countries with no PBCR and for countries with PBCR) to ensure standardization across reporting countries
Ensuring the appropriate infrastructure to allow for in-country data abstraction and remote reporting of data to the central server
Data sharing agreements between countries to ensure complete capture of data on cases

8. Achievements to date Oct 18, 2018 April 27, 2019 June 7, 2019
Presented to the OECS Council of Ministers of Health Meeting on Oct 18, 2018, and received endorsement
April 27, 2019
Presented to the Eastern Caribbean Diagnostic Network (EC-DON) The network supported the development of the Regional Cancer Registry and nominated the Caribbean Hub to lead the EC-DON Cancer Registry Working Group
June 7, 2019
CARPHA and the OECS Commission signed a Letter of Agreement detailing the shared technical and financial responsibilities of each agency for successful implementation of the Regional Cancer Registry
EC-DON is a pathology network of OECS laboratory professionals, oncology diagnosticians and the oncology community working to improve pathology reporting in support of better cancer diagnosis and treatment.
Achievements to date

9. Expected Outcomes
Reporting of cancer incidence data from all OECS countries to one central database
Providing a wholistic view of the cancer burden within the OECS
Development of useful national and regional reports on cancer
Allows for immediate feedback of results to reporting countries
Facilitates evidence-based planning for cancer prevention and control at the national and regional levels

10. Authors
Sarah Crooks
Programme Coordinator, IARC Caribbean Cancer Registry Hub
CARPHA, Trinidad & Tobago
Brenda Edwards
Senior Advisor, Office of the Director, Division of Cancer Control and Population Sciences, NCI
Damali Martin
Global Health Coordinator, Epidemiology & Genomics Research Program, Division of Cancer Control and Population Sciences, NCI
Carlene Radix
Head of Health
OECS
Glennis Andall-Brereton
Principal Investigator, IARC Caribbean Cancer Registry Hub
CARPHA, Trinidad & Tobago
Les Mery
Global Programme Manager, Cancer Surveillance Unit, IARC
Nkosi Husbands
IT Specialist, IARC Caribbean Cancer Registry Hub
CARPHA, Trinidad & Tobago

11. Thank You
Any questions?