Transcript How the v4 Dataset fits with the UKRDC

UKRR Dataset v4.1
How does it fit with the
UKRDC
ACTIONS IN YOUR RENAL UNIT TO
IMPLEMENT THE NEW DATASET
Fiona Braddon
Clinical Informatics Manager
UKRR
UK RENAL REGISTRY
2015 INFORMATICS MEETING: DATA MATTERS
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
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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
From 1st January 2015 collect data on AKI
Submit Q1 2015 to the RR – due October 2015
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
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
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
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
Blood test results, BP, weight
Monthly or all results sent to UKRDC
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
UK RENAL REGISTRY 2015 INFORMATICS MEETING: DATA MATTERS
Medications
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
UK RENAL REGISTRY 2015 INFORMATICS MEETING: DATA MATTERS
Transplant
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
UK RENAL REGISTRY 2015 INFORMATICS MEETING: DATA MATTERS
Submission of new dataset to the UKRR
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
UK RENAL REGISTRY 2015 INFORMATICS MEETING: DATA MATTERS