1. UKRR Dataset v4.1 How does it fit with the UKRDC ACTIONS IN YOUR RENAL UNIT TO IMPLEMENT THE NEW DATASET UK RENAL REGISTRY 2015 INFORMATICS MEETING: DATA MATTERS Fiona Braddon Clinical Informatics Manager UKRR

2. Why change the dataset ? In advance of the U.K. Renal Data Collaboration when data will be sent to UKRR daily Make the data more granular No more derived data items Every item has a date Collect Every blood result All medications Every dialysis session Every access construction and intervention The population is expanded to include AKI and CKD in addition to the patients on RRT. This will enable the UKRR to study the progression of renal disease. UK RENAL REGISTRY 2015 INFORMATICS MEETING: DATA MATTERS

3. From 1st January 2015 collect data on AKI All Acute patients Timeline with modality codes 80 -83 Every Acute timeline must be followed by another timeline of  Recovered function  Chronic modality code 1 – 29  Death The Renal Registry is collecting data on AKI for NHS England From 2016 a QHD block is required for every dialysis or PEX session UK RENAL REGISTRY 2015 INFORMATICS MEETING: DATA MATTERS Submit Q1 2015 to the RR – due October 2015

4. From 1-1-16 Data for ALL patients with a GFR of < 30 to be collected and submitted to the RR Not just patients on Renal Replacement Therapy Includes AKI, Low Clearance, Conservative Management patients Continue to send data even if GFR rises above 30 UK RENAL REGISTRY 2015 INFORMATICS MEETING: DATA MATTERS

5. Comorbidity All Comorbidity to start collection when patient is first seen by the Nephrologist. The COM block is a cumulative record of chronic diagnoses with dates of diagnosis. If exact date is not known use 1st of the month or 1st of January if only year is known. This will give a better measure of Comorbidity which predates renal failure and which conditions appear after commencement of RRT. This will greatly improve survival analysis. UK RENAL REGISTRY 2015 INFORMATICS MEETING: DATA MATTERS

6. Dialysis Access One last year of spreadsheet First access is now in the ERF Block with date referred for access surgery and 1st access used for dialysis. This will enable audit of referral for vascular access construction. Every access is recorded in the ACC Block and complications,infections, interventions and failure in the ACP Block. You will not be expected to backdate access data. Start with every access created from 1/1/16. UK RENAL REGISTRY 2015 INFORMATICS MEETING: DATA MATTERS

7. Blood test results, BP, weight UK RENAL REGISTRY 2015 INFORMATICS MEETING: DATA MATTERS Blood test results each with date Extended list of blood tests including immunosuppression levels and serology Modality and dialysis access at end of every month Shared care data BP Weight Height in children Monthly or all results sent to UKRDC

8. Medications UK RENAL REGISTRY 2015 INFORMATICS MEETING: DATA MATTERS All medications, name, dose, frequency. Each with a start and stop date This will improve the quality of data on ESA, Immunosuppression and blood pressure drugs, all of which are currently very poorly reported. Most units already send this data to Patient View and patients can check medication list is correct

9. Transplant UK RENAL REGISTRY 2015 INFORMATICS MEETING: DATA MATTERS This is particularly important to make data on transplants compatible with the UKRDC. Mandatory data on each transplant, including those carried out abroad  Date of transplant  Type of transplant  Relationship to donor if live transplant  Date of failure  Cause of failure It is hoped that NHSBT will join the UKRDC and thus share transplant data. The TRA block is a complete list of data required for each transplant to facilitate outcome analysis

10. Submission of new dataset to the UKRR UK RENAL REGISTRY 2015 INFORMATICS MEETING: DATA MATTERS First of all ….. Make sure you are collecting the data on your Renal IT System The order in which data is collected may have to change. Particularly comorbidity – start collection when patient is first seen, not retrospectively at ESRF. If your unit and IT supplier is an early pilot site for the UKRDC then real time data can be sent early in 2016 Or send quarterly data (including 3 monthly blocks) in new v4.1 blocks from mid 2016