1. 25.01.10 Annual Informatics Meeting Changes to the Renal Registry Dataset Fiona Braddon Clinical Informatics Manager

2. 25.01.10 Annual Informatics Meeting National Renal Dataset Additions to Registry Dataset to comply with NRD Monthly Data Block (QBL) dates for all bloods, urines, BP & To replace Quarterly Data block over the next year Vascular Access (ACL, ACC, ACP) Introduction of units and ranges for many items Revision of Transplant block (TRA) Codes added for non UK & Pre-emptive transplants Detailed code lists & definitions of Comorbidity

3. CKD5 Reason for data collection Up until now RR only collected data on patients from the date RRT started Most patients attend a Renal Unit before starting RRT and data is recorded on Local IT systems Very little documented about the course of Renal Failure DOH targets/ guidelines are being introduced to monitor all renal patients First National audit – Vascular Access 25.01.10 Annual Informatics Meeting

4. 25.01.10 Annual Informatics Meeting CKD5 Chronic kidney disease Stage 5 Definition 2 measurements of eGFR < 15 more than 90 days apart in patients who have NOT previously had RRT The first of those measurements is the date of start of CKD5

5. CKD5 Data to be sent to RR One-off set of data for each patient starting CKD5 in the quarter Monthly data block QBL for the 12 months prior to date of start of CKD5 QBL block from date of start of CKD5 until start of RRT – or death of patient Modality of QBL block prior to CKD5 = 900 No ERF block until start of RRT 25.01.10 Annual Informatics Meeting

6. Renal patient Progression of disease from April 07—April 09 CKD5 data extraction 200720082009 month4567891011121234567891011121234 day1015181912210228010810050910052730 eGFR35 50452520108151413121011816754 CKD501/0410/07 RRT12/02 QB block CKD5 Start date 01/04/08 RRT Start date 12/02/09

7. Transplant data Review of all Transplant information held by RR Working with UK Transplant crosschecking data and agreeing which NRD data to be sent to RR & which to UKT A significant no of Transplants held by RR have no record on UKT or Transplant dates do not match Modality code for overseas Tx incorrect Demographic data not up to date 25.01.10 Annual Informatics Meeting

8. Transplant data -changes to RR dataset Date of transplant included in TRA block Simplified data on Immunosuppression only Y/N for each drug administered in Quarter – prophylaxis/ acute rejection purpose removed List of organs transplanted expanded Codes for Transplants done abroad -27 + Pre-emptive transplants added – 35,36 Serology block SER now mandatory for Tx pts 25.01.10 Annual Informatics Meeting

9. Rules for transplant patient data in timelines Transplant centres – Date of Transplant use correct modality code 20-29 Treatment Centre code = Transplant centre if patient from another unit first time line Transferred in 60-69 Transferred out -38 Non Transplant Centre Transfer out 38 to Transplant centre code Transfer in on Transplant 60-69 Do not guess date of transplant or default to date IT system was purchased ! 25.01.10 Annual Informatics Meeting

10. Future revisions of dataset Planned every 6 months unless urgent change required Published on RR website and sent to Renal System managers, Clinical Directors & system suppliers All changes documented Publication of dataset in Excel spreadsheet format with matches to NRD items soon 25.01.10 Annual Informatics Meeting