UKRR CKD clinical dataset - submission

The UK Renal Registry (UKRR) has now collected and validated your 2020 data. Once again, we’d like to thank you for your continued support in collecting the data. Without it, collection would be an impossible task. We look forward to working with you again for the next data collection cycle. The data are being reviewed by our Statisticians in readiness for the creation of the annual report and we are now able to start data collection for 2021.

2021 data collection will be in accordance with the following timetable. We ask that all centres are ready to submit their data at the start of the data collection period with any internal data quality routines already completed.

As individual units and renal system suppliers are at various stages of adoption of v4.2 of the dataset, the time taken to process each quarterly file varies from site to site and makes production of a definitive timetable difficult.

At the time of writing, we are aiming to collect 2021 data as detailed in the table, but this is subject to change as the data collection cycle is dynamic and is dependent on many external factors. 

Dataset v5

The consultation for the new dataset, v5, has now closed, and the comments are being reviewed.

We will publish our response at the beginning of December, thank you to everyone who has been in contact with us. 

All the information about the dataset consultation can/will be found at: https://ukkidney.org/renal-association/news/dataset-version-5 .

One of the key logistical changes with the introduction of the dataset is that it must only come to the UKRR in a UKRDC feed and that the current quarterly file submissions will be stopped.

UKRDC

Data collection now regularly occurs via the UK Renal Data Collaboration pathway. The UKRDC aims to reduce the burden of providing data for audit whilst at the same time improving reporting completeness of the data. This is achieved by submitting daily updates (using the UKRDC schema - https://github.com/renalreg/ukrdc ) to the UKRDC for all patients who would normally be audited (and any who may be on PatientView and/or RaDaR but don’t currently fall within the cohort). The UKRDC will then sync data to PatientView removing the need for a separate PatientView feed and will also sync data with RaDaR, the Rare Disease registry.

Quarterly audit files will be generated from the UKRDC for use in the annual report initially as sites transition. This will allow timelier processing of audit data and closer to real-time reporting. As these data flows develop, we will provide more real-time views of the data. We are currently working with several renal suppliers to develop UKRDC feeds from their systems.

Just a reminder that we process files in order of receipt and currently units have a maximum of two weeks to return their response to the queries if the file was originally submitted in accordance with our Data Managers’ request. Where files are submitted late in the process or queries are not responded to within the given two-week period without prior agreement, files may be loaded as submitted, with any essential missing/incorrect information defaulted as deemed fit by the Data Manager. Your Data Manager will be happy to liaise with you where possible to try and accommodate any peaks and troughs in your workload within the data collection process. Please just let them know.

Your designated Data Manager will be contacting you soon to commence the 2021 data collection. In the meantime, please begin any pre-submission routines you may have to check and clean your data.