NHS Digital Data Release Register - reformatted

Institute Of Cancer Research

Project 1 — DARS-NIC-147748-XD18S

Opt outs honoured: Y

Sensitive: Sensitive

When: 2017/03 — 2017/11.

Repeats: Ongoing

Legal basis: Section 251 approval is in place for the flow of identifiable data, Approved researcher accreditation under section 39(4)(i) and 39(5) of the Statistical Registration Service Act 2007

Categories: Identifiable

Datasets:

  • MRIS - Scottish NHS / Registration
  • MRIS - Members and Postings Report
  • MRIS - Cause of Death Report

Objectives:

The data supplied will be used only for the approved Medical Research Project - MR400 - Cohort Study of People with Insulin Treated Diabetes


Project 2 — DARS-NIC-147749-3SSRF

Opt outs honoured: Y

Sensitive: Sensitive

When: 2017/03 — 2017/05.

Repeats: Ongoing

Legal basis: Section 251 approval is in place for the flow of identifiable data, Approved researcher accreditation under section 39(4)(i) and 39(5) of the Statistical Registration Service Act 2007

Categories: Identifiable

Datasets:

  • MRIS - Members and Postings Report
  • MRIS - Scottish NHS / Registration
  • MRIS - Cause of Death Report

Objectives:

The data supplied by the NHS IC to Institute of Cancer Research will be used only for the approved Medical Research Project identified above.


Project 3 — DARS-NIC-147923-P5DTX

Opt outs honoured: Y

Sensitive: Sensitive

When: 2017/03 — 2017/05.

Repeats: Ongoing

Legal basis: Approved researcher accreditation under section 39(4)(i) and 39(5) of the Statistical Registration Service Act 2007 , Section 251 approval is in place for the flow of identifiable data

Categories: Identifiable

Datasets:

  • MRIS - Cause of Death Report
  • MRIS - Cohort Event Notification Report
  • MRIS - Scottish NHS / Registration

Objectives:

The data supplied by the NHS IC to Institute of Cancer research will only be used for the approved Medical Research Project.


Project 4 — DARS-NIC-148096-PT589

Opt outs honoured: N

Sensitive: Sensitive

When: 2016/04 (or before) — 2018/05.

Repeats: Ongoing

Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC

Categories: Identifiable

Datasets:

  • MRIS - Cause of Death Report
  • MRIS - Cohort Event Notification Report
  • MRIS - Scottish NHS / Registration
  • MRIS - Flagging Current Status Report

Objectives:

Purpose The data supplied by the NHS IC to Institute of Cancer Research will be used only for the approved Medical Research Project identified above.


Project 5 — DARS-NIC-148118-VCXW9

Opt outs honoured: N

Sensitive: Sensitive

When: 2016/04 (or before) — 2018/05.

Repeats: Ongoing

Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC

Categories: Identifiable

Datasets:

  • MRIS - Scottish NHS / Registration
  • MRIS - Cause of Death Report
  • MRIS - Cohort Event Notification Report
  • MRIS - Flagging Current Status Report

Benefits:

The UKGPCS has been running since 1992, and gained MREC approval in 2003. The study is UK wide and currently 162 hospitals recruit prostate cancer patients with young onset or familial prostate cancer into the study. The Royal Marsden Hospital has ethical approval to recruit prostate cancer patients of any age to the study. Currently there are 10,491 patients consented to the study, and the target is 21,000 by the end of 2012. Each consented patient gives a blood sample, and a family history questionnaire, and we obtain clinical data from their consultant. Not all patients have given consent to re contact them and we do not have current addresses for many of the participants, some of whom were recruited more than 10 years ago.

Outputs:

The study aims to find genes which predispose to prostate cancer, and to determine whether variation in risk genes influence the prognosis of individuals with prostate cancer

Processing:

Standard time-to-event analysis will be used to test for association between genotype and prognosis. Time at risk will begin on the date of diagnosis, with time under observation beginning on date of blood sample receipt. Follow-up will be censored on the date of death from any cause, or, if death did not occur, on the date of the end of the study. We already have genotype data, date of diagnosis and date of blood receipt for all our cases. We therefore request death certificate data to enable us to obtain date of death and cause of death for those men in UKGPCS who have died. (see point 12)

Objectives:

The study aims to find genes which predispose to prostate cancer, and to determine whether variation in risk genes influence the prognosis of individuals with prostate cancer. 31 regions of the genome have now been associated with prostate cancer (the majority found by our research group), and we can now begin to analyse what effects these “risk regions” have on prostate cancer aggressiveness and outcome. Our aims are to find new genetic markers to identify who might be at risk of developing prostate cancer in the future; to be able to more accurately target appropriate treatments to those patients who are most likely to have aggressive disease and to develop new drug treatments for prostate cancer. This has the potential to be able to target screening to those who would benefit from this manoeuvre and the potential to improve survival. (see point 10)


Project 6 — DARS-NIC-226323-X4L5B

Opt outs honoured: Y

Sensitive: Sensitive

When: 2016/04 (or before) — 2016/08.

Repeats: Ongoing

Legal basis: Approved researcher accreditation under section 39(4)(i) and 39(5) of the Statistical Registration Service Act 2007

Categories: Identifiable

Datasets:

  • MRIS - Cause of Death Report
  • MRIS - Cohort Event Notification Report

Objectives:

As part of the ARTISTIC trial, between 2001-09, 24510 women underwent HPV testing with genotyping. This project concerns long-term follow-up of this unique cohort through notification of cancer and death. The aim is to evaluate the long-term value of HPV testing as a primary screening strategy. Cervical screening intervals of 6-10 years following a negative HPV test are now being considered and which demonstrates the importance of long-term data on cohorts such as ARTISTIC. The universal introduction of primary HPV testing in the NHS cervical screening programme will require several practical decisions on test method and frequency with large effects on costs, staff time and patient acceptability, as well as on effectiveness of cancer prevention. Our findings will add to the body of evidence to allow policy -makers to improve the cervical screening programme in the UK (and around the world). The results will be presented at international HPV conferences and published in peer-reviewed journals. In addition, anonymised individual data (including events notified through this flagging process) has been pooled with 3 other European trials in order to evaluate the efficacy of HPV testing for preventing invasive cervical cancer (to be published in the Lancet shortly). In screened cohorts, invasive cervical cancer is so rare that pooling data with other large studies is the best way to evaluate this.