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UK NSC blood spot task group project: PPVs required

By September 8, 2023No Comments

The UK National Screening Committee (UK NSC) makes recommendations to ministers in the 4 UK countries on all aspects of population screening, including newborn blood spot (NBS) screening. NBS screening seeks to identify babies with often very rare conditions soon after birth to enable early intervention. But, because of their rarity, these conditions present significant challenges in evidence-based medicine because it is often very difficult to collect good-quality evidence, on which the UK NSC can base its recommendations.

The UK NSC recognises these difficulties and, in 2022, it established the Blood Spot Task Group (BSTG), a forum which brings together expertise in NBS screening, including patient and public voice (PPV) representatives. The aim of the group is to identify practical and innovative approaches to help researchers and others develop evidence that could help the UK NSC make robust recommendations about new or modified screening programmes within the constraints of limited evidence bases.

One such approach includes modelling. Modelling represents a set of mathematical techniques and methods to synthesise evidence from different sources with expert opinion, which then enables the simulation of comparisons which would not be achievable using primary research methods. This approach is increasingly moving to the centre of UK NSC practice on rare diseases.

One of the projects that the BSTG is developing focuses precisely on modelling. More specifically, it aims to look at challenges, opportunities and practical approaches when developing modelling for rare diseases in NBS settings.

The Sheffield Centre for Health and Related Research (ScHARR) at the University of Sheffield has been commissioned to carry out this work, which consists of preparing a rapid review of the literature and a manuscript for publication in a peer-reviewed journal. The manuscript will be developed through an expert consensus process supported by a rapid review of methodological literature and modelling studies.

ScHARR wants to put together an expert group for this project, and as part of this group we would like to recruit 2 PPVs. This can be pertinent to members of the rare disease community who have an interest in shaping the policy-making process in relation to newborn screening. For example, the PPVs can be parents of a baby affected by a rare disease and/or members of an advocacy group.

The PPVs will be asked to take part in 2 online workshops lasting approximately 2 hours each around November 2023 and March 2024, when, among other things, PPVs would be expected to ‘sense-check’ the discussion by bringing forward their perspectives and perhaps their experiences of newborn screening and/or rare diseases. In addition, reading papers between workshops would be a requirement.

Department of Health and Social Care (DHSC) policy covers the cost of travel and expenses for meetings. Since these meetings are virtual, these reimbursements will not be available for this project.

If you are interested in this opportunity, please send an email to by no later than Monday 25 September at 10am BST.

Please write “PPV call for BSTG project” as the email subject and in your email please provide:

  • your name and contact details (email address)
  • a short statement describing:
    • why you want to take part in this project
    • your experience of newborn screening and/or rare diseases
    • any experience of PPV input in similar projects
Ben Kemp