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SHARE Registry

Chair: Prof. Mpiko Ntsekhe

Project Manager: Ms Elizabeth Schaafsma

Prof. Francis Smit

Prof. Karen Sliwa-Hahnle

Ms Erika Dau

All queries to be addressed to Elizabeth Schaafsma in the SHARE office on

Landline: +27 (11) 784 5652

Mobile: + 27 83 603 7700

Email: elizabeth@vodamail.co.za

The SHARE registry project has been a major enterprise in our Association over the last 8 years, in response to the global growth in the use of registries to provide data for evidence based research to improve standards of patient care. The combined surgical and cathlab registries amassed over 18 000 patient records in the first phase of the data collection, and will be reported on in publications in the coming months.

In terms of progress to date, two SHARE Phase II projects have already been initiated, namely the SHARE II TAVI registry led by Drs Jacques Sherman and Hellmuth Weich, and the SHARE II Cardiac Disease and Maternity Registry (CDM) by Prof Karen Sliwa and Dr Pillay. Initial planning and Investigators’ meetings have been fruitful - protocols have been submitted and approved, ethics approval obtained, the datasets have been defined and IT development is completed, and the databases tested. Live data collection for each of these projects will be officially launched at the SA Heart Congress 2014 in Durban. A third registry - the SHARE STEMI-registry championed by Dr Adriaan Snyders is well down the road to being ready to be launched in the near future.

On the current trajectory the future of SHARE looks bright. We anticipate that as capacity and resources grow we will be able to welcome new projects on board and expand the stable of registries in order to make valuable contributions at our national congress, other SA Heart affiliated clinical meetings and potentially influence and improve clinical practice, patient care, and public policy in the future.

The registry is intended to be used by all SA Heart members and associated Special Interest Groups, and we would welcome approaches for new research projects to be run under the umbrella of SHARE. Should you be interested in initiating a research project, please send us an Expression of Interest document, which will briefly outline your proposed project. Please submit it according to the instructions contained in the Invitation to submit a Proposal document, which may be downloaded from here. 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 when it meets once every two months, the investigators may submit a full Project Protocol according to these guidelines, and this Project Protocol must have Ethics Approval and must meet all the relevant SHARE criteria.Guidelines for the submission of project Protocols, following the acceptance of the proposal may be found here. The SHARE Project Manager, 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.

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