Research Share Project

One of the most important roles that SHARE registries can play in South Africa is to provide data that is unbiased, and representative of healthcare across all economic sectors and geographic regions of the country, and present this data in public forums to provide an evidence base for healthcare improvements in the South African setting.

SHARE REGISTRY COMMITTEE

Chair: Prof Nqoba Tsabedze

Project Director: Ms Elizabeth Schaafsma

Ms Erika Dau

Prof Mpiko Ntsekhe

Prof Jacques Scherman

Dr Hellmuth Weich

Prof Ashley Chin

Dr Martin Mpe

Prof Eric Klug

Dr Andrew Thornton

Dr Jens Hitzeroth

The SHARE registry projects have been the focus of research efforts in our Association over the last 15 years, in response to the global growth in the use of registries to provide data for evidence-based research. SA Heart’s first national registry projects ran from 2006-2013, and the surgical and cathlab national registries combined amassed over 18 000 patient records in that phase of data collection.

The second phase of the SHARE registry projects is focused on collecting data in smaller niche registries, to provide locally-relevant data on specific devices or conditions, which can be used to inform guidelines and policy in South Africa’s resource-constrained healthcare environment.

Live data collection for the first two of these niche projects was officially launched at the SA Heart Congress 2014 in Durban. The SHARE CDM registry looked at referral pathways, treatment protocols and outcomes in terms of Cardiac Disease in Maternity (CDM) and was led by Prof Karen Sliwa and Dr Priya Soma-Pillay. This registry has now closed and analysis of the results is being done in preparation for publication.

The SHARE TAVI registry has collected an extensive clinical dataset on South African patients evaluated for TAVI/TAVR implants, and has procedural and outcomes data for the patients who have proceeded on to have TAVI implants. The SHARE TAVI registry has been steered by the committee of Profs Mpiko Ntsekhe, Jacques Sherman and Dr Hellmuth Weich, who have published guidelines on the use of TAVI implants in South Africa, in the SA Heart Journal. These guidelines have been updated since the registry’s inception, based on changes in the ESC guidelines, together with information from the registry’s local outcomes data. Linking the entry of patients into the TAVI registry with approval for funding of the TAVI has encouraged a high level of participation in this voluntary capture registry, with over 90% of all TAVIs in South Africa being captured into this registry.

The SHARE SAFFR Atrial Fibrillation/Flutter registry championed by Drs Martin Mpe and Ashley Chin was tested in 2019 and launched in 2020 just before Covid struck. It became necessary to pause the registry during peak Covid waves as some of the sites had to close their clinic services as staff were diverted to emergency calls and Covid wards. This registry has been re-initiated and is gaining momentum with additional sites joining in the course of this year. The SHARE SAFFR registry examines the clinical history and current clinical picture of both prior and newly diagnosed Atrial Fibrillation/Flutter patients, and looks at the available treatments in both the State and Private sectors, and reviews the outcomes of the various locally available treatment protocols. In 2023 a new arm to this registry will be launched, it will survey patients’ expectations and perceptions of their condition and treatment through automatically generated links to a patient-reported quality of life survey.

We will be welcoming several new registries over 2022 and 2023, some are in the early planning stages and others close to being initiated. Watch this space for announcements regarding new technologies and medical treatments and to see how the registries can help to improve patients’ access to treatment.

Many entities in South Africa collect data for their own use, and most of this data is proprietary and not available outside of the entity concerned. One of the most important roles that SHARE registries can play in South Africa is to provide data that is unbiased, and representative of healthcare across all economic sectors and geographic regions of the country, and present this data in public forums to provide an evidence base for healthcare improvements in the South African setting.

SHARE registry projects are committed to publishing their findings in reputable journals, and investigators have already presented Outcomes data at many conferences, such as the SA Heart Congresses, as well as at the AfricaPCR, EuroPCR and ESC Congresses. Selected presentations from these meetings are available on this website for download.

We would welcome other new registry projects on board to improve patient care in South Africa by informing clinical practice and providing a locally-relevant evidence base for policy decision making in both the private and public sectors. SHARE is intended to be used by all SA Heart members and associated Special Interest Groups, should you be interested in initiating a research project, please send us an Expression of Interest document, which will briefly outline your proposed project.

The SHARE committee will then evaluate this Expression of Interest to see if the proposed project is aligned with the SHARE objectives, and if it meets the criteria for a SHARE project. The criteria for a SHARE registry are set out in the Guidelines for the submission of project Protocols. If the initial project proposal is approved by the SHARE committee, the investigators may submit a full Project Protocol according to these guidelines, and this Project Protocol must include Ethics Approval and must meet all the relevant SHARE criteria, unless specifically motivated. The SHARE Project Director, Elizabeth Schaafsma, can advise applicants on any of the aspects of the documents, and can provide assistance with the development of both the proposal and protocol documents.