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pdf_icon.gif  Draft UK Shunt Registry Report 2017 

pdf_icon.gif  Data Management and Reporting Update 

pdf_icon.gif  Patient Information Sheet 

The Draft UK Shunt Registry Report  summarises many of the findings from the first 25 years of the UKSR. In addition, we have included an update on the registry’s objectives, data management and reporting plans, thus outlining its future direction and the opportunities that this brings. Over the last three years, under the auspices of the SBNS and the British CSF Group, the registry has moved to an electronic data management system hosted within the ORION platform.

Considerable effort has been dedicated over the past year to cleaning up the database and updating compliance with the ever-evolving national governance mechanisms. For example, the UKSR has undergone a rigorous assessment of its data governance processes, and successfully received S251 exemption for linking patient identifiable data with other national datasets. This requires a process for enabling patients to be informed and give consent to their data to be entered onto the registry whenever feasible. A patient information leaflet for the registry is included. We will be contacting you shortly with further details of the consent process.

The database is now ready to be explored in more detail. We are keen to encourage your active involvement, not only with continuing data entry but also with exploiting the database to address important issues. The electronic platform already allows each participating unit to extract all its own prospectively entered data in its entirety without restriction. In addition, the UKSR and British CSF Group are forming a small committee to handle data access requests, including the provision of aggregate data for CSF-related research, and linking with other neurosurgical initiatives including the NNAP and GIRFT.

Participation in the UKSR is a mandatory Key Service Outcome Measure (NHS Standard Contract DO3/S/a). We are sending individual units their own revision rates including infection. In line with other national audits, there is a requirement for establishing robust performance indicators and an associated outlier policy. We therefore include details of proposed indicators and outlier policy for the UKSR that will form the basis for future discussion within the data monitoring committee and other stakeholders (e.g. NNAP, GIRFT) prior to the first audit reporting cycle. 

                                                                               Registries matter.

In his newly published Life Sciences Industrial Strategy (2017), Sir John Bell has emphasised the importance of Registries: ‘National Registries of therapy-area-specific data across the whole of the NHS in England should be created and aligned with the relevant charity’. The SBNS in general and the UKSR in particular are well placed to fulfil this mission. The UKSR has been followed by the creation of other hydrocephalus Registries in Sweden (Swedish Hydrocephalus Quality Registry for adults established in 2004) and Australasia (nsa.org.au; 2016). In North America, there are the paediatric and adult hydrocephalus clinical research networks (founded in 2008 and 2012; hcrn.org and ahcrn.org respectively).

We are very grateful to all those who have supported the UKSR over so many years. We look forward to hearing from you. Please address all enquiries in the first instance either to:


Prof. John Pickard  jdp1000@cam.ac.uk  or Dr Alexis  Joannides aj238@cam.ac.uk   

                                                      

Professor (Emeritus) John Pickard                                        Dr Alexis Joannides

Last Updated: 22 June 2018