NHS Digital Data Release Register - reformatted
London North West Healthcare NHS Trust projects
24 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).
MR1143 - Renewal of Investigation of genetic and environmental factors underlying cardiovascular disease the — DARS-NIC-148269-0WSH2
Type of data: information not disclosed for TRE projects
Opt outs honoured: No - consent provided by participants of research studY, Identifiable, Yes, No
Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC, Informed Patient consent to permit the receipt, processing and release of data by NHS Digital, Health and Social Care Act 2012 – s261(7), , Informed Patient consent to permit the receipt, processing and release of data by NHS Digital; Section 42(4) of the Statistics and Registration Service Act (2007) as amended by section 287 of the Health and Social Care Act (2012)
Purposes: No (NHS Trust)
Sensitive: Sensitive
When:DSA runs 2010-06-18 — 2020-06-17 2016.11 — 2020.03.
Access method: Ongoing
Data-controller type: LONDON NORTH WEST UNIVERSITY HEALTHCARE NHS TRUST
Sublicensing allowed: No
Datasets:
- MRIS - Cause of Death Report
- MRIS - Cohort Event Notification Report
- MRIS - Members and Postings Report
- MRIS - Scottish NHS / Registration
- MRIS - Flagging Current Status Report
- MRIS - Personal Demographics Service
Objectives:
Investigation of genetic and environmental factors underlying cardiovascular disease – the London Life Sciences Population (LOLIPOP) Study.
The primary aims of the LOLIPOP study are to identify the genetic and environmental factors underlying the two fold increased risk of cardiovascular disease amongst UK Indian Asians compared with European whites.
Data access is restricted to those named in section 7 of this agreement. Any changes will be notified to the NHS IC.
The LOLIPOP study is a prospective population cohort comprising ~18,000 Indian Asian and ~12,000 European white men and women living in West London. Consenting subjects complete a questionnaire (recording current, past and family medical history, cardiovascular risk factors, current medications, alcohol and cigarette consumption) have measurements of height, weight, waist hip ratio and blood pressure, as well as a 12 lead ECG. Fasting blood samples are collected for routing haematology and biochemistry (including blood lipids). Aliqouts of plasma, serum and DNA are stored for future analyses. Baseline assessments are complete.
We now plan to undertake follow-up to identify incident cardiovascular events, using death certification, hospital discharge coding and local cardiac databases. We ask the Information Centre to flag research participants, and inform LOLIPOP investigators of participants who have died along with the cause of death. Flagging should continue for 20+ years.
Possible cardiovascular events, including deaths, will be verified against source data where possible. This will be done through review of hospital, primary care and coroners records.
Yielded Benefits:
Expected Benefits:
The LOLIPOP study is a prospective population cohort comprising ~18,000 Indian Asian and ~12,000 European white men and women living in West London. Consenting subjects complete a questionnaire (recording current, past and family medical history, cardiovascular risk factors, current medications, alcohol and cigarette consumption) have measurements of height, weight, waist hip ratio and blood pressure, as well as a 12 lead ECG. Fasting blood samples are collected for routing haematology and biochemistry (including blood lipids). Aliqouts of plasma, serum and DNA are stored for future analyses. Baseline assessments are complete.
We now plan to undertake follow-up to identify incident cardiovascular events, using death certification, hospital discharge coding and local cardiac databases. We ask the Information Centre to flag research participants, and inform LOLIPOP investigators of participants who have died along with the cause of death. Flagging should continue for 20+ years.
Possible cardiovascular events, including deaths, will be verified against source data where possible. This will be done through review of hospital, primary care and coroners records.
Outputs:
The LOLIPOP study is a prospective population cohort comprising ~18,000 Indian Asian and ~12,000 European white men and women living in West London. Consenting subjects complete a questionnaire (recording current, past and family medical history, cardiovascular risk factors, current medications, alcohol and cigarette consumption) have measurements of height, weight, waist hip ratio and blood pressure, as well as a 12 lead ECG. Fasting blood samples are collected for routing haematology and biochemistry (including blood lipids). Aliqouts of plasma, serum and DNA are stored for future analyses. Baseline assessments are complete.
We now plan to undertake follow-up to identify incident cardiovascular events, using death certification, hospital discharge coding and local cardiac databases. We ask the Information Centre to flag research participants, and inform LOLIPOP investigators of participants who have died along with the cause of death. Flagging should continue for 20+ years.
Possible cardiovascular events, including deaths, will be verified against source data where possible. This will be done through review of hospital, primary care and coroners records.
Processing:
No contact will be made with any individual(s) that could be identified from the information supplied, except as specified in the protocol and associated letters agreed between the Ealing Hospital NHS Trust, Uxbridge Road, Middx UB1 3HW and the NHS IC.
Use of these Datasets are for the sole purpose set out above. The Data must not be shared with any other organisation or named individual not explicitly referred to within this agreement. If the information referred to herein is subject to an FOI or other request to share the Data, then agreement from the NHS IC must be sought before undertaking this.
The Dataset must not be shared with any third party in the format in which it is provided to you by the NHS IC.
Information tools derived from this Dataset will not be provided to any organisations without the specific consent of the NHS IC.
Any publications derived from this Data by any party must be subject to ONS confidentiality guidance on the release of Health Statistics:
http://www.ons.gov.uk/about/consultations/closed-consultations/disclosure-review-for-health-statistics---consultation-on-guidance/