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SHARE Registry

 

SA Heart® Registry – SHARE Committee members

Prof Mpiko Ntsekhe (Chairperson), Mrs Elizabeth Schaafsma (Project Manager), Ms Erika Dau,  Prof Karen Sliwa, Prof Francis Smit, Dr Jacques Scherman, Dr Hellmuth Weich, Prof Ashley Chin, Dr Martin Mpe, Dr Eric Klug and Dr Jane Moses.

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

Mobile: + 27 83 603 7700

Email: elizabeth@saheart.org

The SA Heart registry project has been a major enterprise in our Association over the last 12 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 were reported on at SA Heart Congresses.

From 2014 a new phase of independently funded niche device and condition registries were initiated under the umbrella of SHARE, the new SA Heart registry programme. Two projects were initallly identified to test the SHARE project model, namely the SHARE- TAVI registry led by Drs Jacques Scherman and Hellmuth Weich, and the SHARE Cardiac Disease and Maternity Registry (CDM) by Prof Karen Sliwa and Dr Soma-Pillay. Live data collection for each of these projects was officially launched at the SA Heart Congress 2014 in Durban, and the CDM project has now successfully completed its life cycle of data collection.  The TAVI project has collected data on 92% of TAVIs in South Africa through the voluntary participation of all 13 sites, and outcomes data from the TAVI registry has successfully been presented at several local (SA Heart Congress, AfricaPCR) and international meetings such as the EUROPCR and ESC Congress.  A further 3 registries are being initiated, and currently await SAHPRA approval for the device or medication before the registry can be launched.

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.

Downloads

 

 


Attachments:

AfricaPCR 2018 SHARE presentation.pdf
SA Heart Congress 2018 SHARE – TAVI Registry presentation.pdf