• Prevention & Screening
• Cardiology Clinical Trials

• Prevention & Screening
• Cardiology Clinical Trials
• Cardiology

Ronald Henry, MD, Diagnostic and Interventional Registry Group, encouraged physicians attending the Caribbean Cardiac Society meeting to become actively involved in posting data to the website of Caribbean Cardiac Society (CCS) Cardiac Diagnostic and Interventional (CCS CDI) Registry (research{at}dirg.co.tt). The CCS CDI Registry is a Caribbean-based quality improvement initiative designed to evaluate current cardiac practice in the Caribbean. In 2012, 8 Caribbean countries were invited to participate in the registry, including 14 catheterization laboratories in the region. Since that time, additional sites have been invited.

The primary purpose of the registry is to build a voluntary quality assurance tool specific for the Caribbean environment. A secondary objective is to provide a combined database of sufficient size to allow for meaningful research. Once the registry reaches a critical mass, it will allow for collaboration with other cardiac societies and databases and increase the opportunities to become more relevant to the needs and wants of the Caribbean populations. It also provides data to Caribbean national and regional health planners and administrations and is a source of revenue for the CCS.

Since the registry went online (www.ccscdi.com) in January 2013, 528 cases from 2 centers have been entered into the database. Some of challenges that have prevented more widespread participation in the CCS CDI Registry include the following: data management, issues of confidentiality, establishment of ethics committee and institutional review boards, multinational involvement with institutional or national requirements and regulations, Internet access, sustainability, interinstitutional rivalry, concerns about market manipulation, and costs.

All data are aggregated and made anonymous. Data definitions and forms have been vetted through all stakeholders. The data form now includes 75 variables in 9 categories, including administrative data, patient demographics, and patient history and risk factors. Due to the absence of public health policy concerning confidentiality, privacy, and copyright issues in many countries relating to online registries and data collection, feedback was solicited from experts with the American College of Cardiology's National Cardiovascular Data Registry to develop policies to address these concerns. The resulting decision was that there was no need for lengthy ethical documentation when data are collected for quality assurance purposes. The use of data for research papers will require application to the CCS for release and will need to be accompanied by the necessary institutional review board approvals.

The registry continues to seek increased participation. To ensure that the collection of data is consistent and reliable, adequate funding will be needed. Workshops on the standardization of cardiac care are being planned to ensure that the high-level standards are met for development of the database and analysis of data.

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