Guidance

ANNB screening: research advisory committee

Updated 23 August 2021

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This publication is available at https://www.gov.uk/government/publications/annb-screening-submitting-research-proposals/annb-screening-research-advisory-committee

Overview

All 6 NHS antenatal and newborn (ANNB) screening programmes are covered by one research advisory committee (RAC).

This publication provides information about how to request access to data about the NHS ANNB screening programmes and how to submit projects to the ANNB RAC for review.

ANNB RAC support is needed for:

  • research projects involving ANNB participants
  • research, evaluation or audit activities that require national screening programme data

Requests to access data from the NHS screening programmes also need approval by the PHE Office for Data Release (ODR).

Submit your application to the ANNB RAC at screening.research@phe.gov.uk when seeking approval for request proposals.

Deadlines

The next application deadline is 27 October 2021. These applications will be discussed by the committee on 8 December 2021, with outcome letters issued on 6 January 2022.

There’s also another application deadline on 21 December 2021. These applications will be discussed by the committee on 3 February 2022, with outcome letters issued on 7 March 2022.

ANNB RAC review process

The RAC offers a 2-stage review process:

1. Pre-application advice

Send your proposal to the ANNB RAC early for advice on how feasible your request is. Do this before you apply for funding or ethics approvals.

2. Submitting your application

You must send the RAC your:

  • ANNB RAC application form (contact screening.research@phe.gov.uk for a copy)
  • detailed protocol
  • data specification
  • data flow diagram
  • completed ODR submission form
  • regulatory approvals
  • patient information sheets or informed consent forms (if applicable)

All research projects should undergo formal peer review. Include a copy of the report in your application.

PHE ODR approval

Proposals requesting data will be subject to the PHE ODR approvals process.

There is no need to submit a second application to ODR. However, you may be asked to supply additional evidence regarding ethics, legal gateway or security assurances.

You will be charged in line with the cost recovery framework. PHE Screening may make additional charges.

Previously approved projects

All personally identifiable or depersonalised data releases for projects approved by the ANNB RAC are published on the PHE ODR Release Register, which is updated quarterly.

ANNB RAC membership

  • Rachel Knowles (Chair, epidemiologist)
  • Heather Bailey (epidemiologist)
  • Elizabeth Coates (head of research governance, PHE)
  • David Elliman (clinical lead, PHE)
  • Jenny Hewison (applied health researcher)
  • Andrew Rostron (national programmes lead for ANNB screening programmes, PHE)
  • Lesley Tetlow (clinical biochemist)
  • Simone Walters (audiovestibular physician)

Further information

Other useful sources of information include:

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