NHS Digital Data Release Register - reformatted
Royal Derby Hospitals projects
3 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).
MR1176 - The Renal Risk in Derby (R2ID) Study — DARS-NIC-147788-X0G5L
Type of data: information not disclosed for TRE projects
Opt outs honoured: N, Anonymised - ICO Code Compliant, Identifiable (Consent (Reasonable Expectation))
Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC, Health and Social Care Act 2012 s261(2)(c)
Purposes: No (NHS Trust)
Sensitive: Sensitive, and Non Sensitive, and Non-Sensitive
When:DSA runs 2019-05-25 — 2020-05-23 2016.04 — 2017.02.
Access method: Ongoing, One-Off
Data-controller type: UNIVERSITY HOSPITALS OF DERBY AND BURTON NHS FOUNDATION TRUST
Sublicensing allowed: No
Datasets:
- MRIS - Cause of Death Report
- MRIS - Cohort Event Notification Report
- Hospital Episode Statistics Admitted Patient Care
- MRIS - Flagging Current Status Report
- Hospital Episode Statistics Admitted Patient Care (HES APC)
Objectives:
Defining the risk of kidney function decline and cardiovascular disease among patients with chronic kidney disease stage 3: The renal risk in Derby (R2ID) Study -
Most people with Chronic Kidney Disease are looked after in primary care, including those with moderate kidney disease (stage 3). Prevalence of CKD Stage 3 may be approximately 4.5% of population, therefore a significant proportion of the general population. There is a need to develop a comprehensive description of patients with CKD stage 3, assess their management needs and develop scoring systems to predict risk with respect to renal and cardiovascular outcomes.
The aims of the study are:
1. To define the risk of kidney function decline in a cohort of patients with chronic kidney disease (CKD) stage 3.
2. To decline the risk of cardiovascular disease in a cohort of patients with chronic kidney disease (CKD) stage 3.
Yielded Benefits:
The study has reported important data to inform the management of CKD in primary care including: 1. Only 6% of patients require referral to a specialist centre, confirming that the majority can be adequately managed in primary care. 2. The majority of patients follow a benign course, with a very low risk of developing end-stage kidney disease over 5 years. 3. Correction of vitamin D deficiency in a small proportion of patients may improve survival. 4. The use of serum cystatin C (as suggested by NICE guidelines) in addition to serum creatinine to estimate glomerular filtration rate does not appear to offer benefit in primary care. The applicant has published a landmark paper reporting outcomes in the study population over 5 years. Their data show that the risk of progression of CKD over 5 years is relatively low and that some participants even evidenced "remission" of the kidney disease. The most frequent cause of death was found to be cardiovascular disease (Shardlow A, McIntyre NJ, Fluck RJ, McIntyre CW, Taal MW. Chronic Kidney Disease in Primary Care: Outcomes after Five Years in a Prospective Cohort Study. PLoS Med. 2016 Sep 20;13(9):e1002128). The applicant has published a further important paper reporting on the clinical utility of adopting NICE guidance on the use of serum cystatin C to diagnose CKD. Their findings are expected to result in a change in the guidance in future. The NICE Guidelines for management of CKD are currently undergoing revision and we expect that this paper will be used to inform changes on the recommendations for use of cystatin C. (Shardlow A, McIntyre NJ, Fraser SDS, Roderick P, Raftery J, Fluck RJ, McIntyre CW, Taal MW. The clinical utility and cost impact of cystatin C measurement in the diagnosis and management of chronic kidney disease: A primary care cohort study. PLoS Med. 2017 Oct 10;14(10): e1002400.)
Expected Benefits:
The Renal Risk in Derby Study aims to improve knowledge and understanding about disease progression and management of chronic kidney disease stage 3 in primary care. Studies have estimated the prevalence of CKD in the general population to be up to 10 %. The majority of these people are managed in primary care. The information provided by this research pertains to a large population of people, mostly managed in primary care. As such, it is hoped that results from this study will inform future national guidance (specifically, National Institute of Health and Care Excellence CKD guidance) in the management of Chronic Kidney Disease in Primary care , directly benefiting the patients
Outputs:
The HES data requested will provide information about cardiovascular events and acute kidney injury in the study period. Analysis of these data will be published in peer reviewed, scientific journals, and will be included in a PhD thesis. Completion of the PhD thesis and publication of the majority of results should be complete by the end of 2018.
Throughout 2016 and 2017 the Trust intend to present data at nephrology conferences both nationally and internationally. Conferences to be presented at include:
- British Renal Society and Renal Association (Nationally)
- American Society of Nephrology, International Society of Nephrology, European Renal Association (Internationally)
Data from the study will also be conveyed to local General Practitioners through local meetings throughout 2016.
Baseline and first year follow-up data from the study has already been published in the scientific literature and presented at international conferences (See below). The main aims of the study are to investigate the predictors of progressive renal disease in CKD 3 patients, and to evaluate the risk of cardiovascular events in this population. The aim is to publish articles on cardiovascular outcome and risk prediction in this cohort. HES data regarding acute kidney injury will also allow analysis of risks of chronic kidney disease progression.
Selected Previous RRID Study Publications
1. Taal MW, Thurston V, McIntyre NJ, Fluck RJ, McIntyre CW. Impact of Vitamin D Status on the Relative Increase in Fibroblast Growth Factor 23 and Parathyroid Hormone in Chronic Kidney Disease. Kidney Int; published online 15 Jan 2014.
2. Fraser SD, Roderick PJ, McIntyre NJ, Harris S, McIntyre CW, Fluck RJ, Taal MW. Suboptimal blood pressure control in chronic kidney disease stage 3: baseline data from a cohort study in primary care. BMC Fam Pract. 2013 Jun 24;14:88.
3. McIntyre NJ, Fluck RJ, McIntyre CW, Fakis A, Taal MW. Determinants of arterial stiffness in chronic kidney disease stage 3. PLoS One. 2013;8(1):e55444
4. Fraser SD, Roderick PJ, McIntyre NJ, Harris S, McIntyre CW, Fluck RJ, Taal MW. Socio-economic disparities in the distribution of cardiovascular risk in chronic kidney disease stage 3. Nephron Clin Pract. 2012;122(1-2):58-65.
5. McIntyre NJ, Fluck R, McIntyre C, Taal M. Treatment needs and diagnosis awareness in primary care patients with chronic kidney disease. Br J Gen Pract. 2012 Apr;62(597):e227-32.
6. Evans PD, McIntyre NJ, Fluck RJ, McIntyre CW, Taal MW. Anthropomorphic measurements that include central fat distribution are more closely related with key risk factors than BMI in CKD stage 3. PLoS One. 2012;7(4):e34699.
7. McIntyre NJ, Fluck RJ, McIntyre CW, Taal MW. Skin autofluorescence and the association with renal and cardiovascular risk factors in chronic kidney disease stage 3. Clin J Am Soc Nephrol. 2011 Oct;6(10):2356-63.
8. McIntyre NJ, Fluck RJ, McIntyre CW, Taal MW. Risk profile in chronic kidney disease stage 3: older versus younger patients. Nephron Clin Pract. 2011;119(4):c269-76.
Recent RRID Study Conference Presentations (attended by representative from NICE)
American Society of Nephrology November 2015, Poster Presentations
Progression of Chronic Kidney Disease Stage 3 over 5 years in a Prospective Primary Care Cohort Study
A Shardlow, NJ McIntyre, R Fluck, CW McIntyre and MW Taal.
Change in Skin Autofluorescence Over One Year Predicts Mortality at Five Years in a Prospective Cohort of People with Chronic Kidney Disease
A Shardlow, NJ McIntyre, R Fluck, CW McIntyre and MW Taal.
British Renal Society June 2015, Oral Presentation
One Year Incidence of Mortality and Progression in Older vs. Younger People with Chronic Kidney Disease Stage 3 in Primary Care
A Shardlow, NJ McIntyre, R Fluck, CW McIntyre and MW Taal.
Processing:
The RRID study cohort is available to HSCIC already (same cohort as MR1176 / NIC-147788-X0G5L) and will be used to trace against HES.
Once data is supplied from HSCIC to Derby, it will be used in analysis of cardiovascular events and acute kidney injury in the study cohort.
The data will be stored on a password-secured hard drive, and will be accessed only by those directly involved in the study.
Project 2 — HDIS_Royal Derby Hospitals
Type of data: information not disclosed for TRE projects
Opt outs honoured: N ()
Legal basis: Health and Social Care Act 2012
Purposes: ()
Sensitive: Non Sensitive
When:2016.04 — 2016.08.
Access method: Ongoing
Data-controller type:
Sublicensing allowed:
Datasets:
- Access to HES Data Interrogation system
Objectives:
The HES (Hospital Episode Statistics) Data Interrogation System (HDIS) allows users to securely access HES, interrogate the data, perform aggregations, statistical analysis, and produce a range of different outputs. Access to HDIS is only provided to organisations who work within the public sector with a specific interest in public health. There is a strict information governance applications process in place to protect and control how the data is managed.