About

The BPSU is a world leading centre for conducting rare paediatric disease surveillance and facilitates research into rare childhood conditions.

How the BPSU works

Rare diseases and infections are a numerically important cause of illness and death and mortality in childhood. There are upwards of 8,000 rare disease and though individually uncommon, together they affect thousands. Many are characterised by chronicity, high rates of disability or death. These conditions pose a large financial and emotional burden for affected children, their families and health systems.

To address this problem in the UK and Ireland, the BPSU was set up in July 1986, enabling paediatricians to participate in the surveillance and further study of rare disorders affecting children.

Several agencies founded and continue collaborating to support the work of the BPSU: the Royal College of Paediatrics and Child Health (RCPCH), UK Health Security Agency, University College London – GOSH Institute of Child Health.

The BPSU enables doctors and researchers to investigate how many children in the UK and Republic of Ireland are affected by particular rare diseases, conditions, or treatments each year. Since 1985 we have facilitated research on over 130 rare conditions, and have improved outcomes for patients such as policy change, care, and further research. have influenced decisions on these diseases and its impact on patients.

The BPSU is overseen and governed by two bodies

The BPSU Scientific Committee oversees the scientific matters of the BPSU, providing advice and support for researchers wishing to undertake surveillance and research projects on rare paediatric disorders through the BPSU ‘electronic orange card’ reporting scheme.

Membership

Membership comprises of representatives from each of the BPSU’s partner bodies, three medical advisors, two patient and public representatives, a Republic of Ireland representative, two medical trainees and clinical/academic expertise from individuals interested in child health research.

Current members

  • Chair: Dr Peter Davis, Consultant Paediatric Intensivist, Bristol Royal Hospital for Children
  • Deputy Chair: Dr Ifeanyichukwu Okike, Consultant Paediatrician, University Teaching Hospitals of Derby & Burton NHS Foundation Trust
  • Medical advisor: Dr Alex Smith, Specialist Registrar at UK Health Security Agency
  • Medical advisor: Dr Lamiya Samad, Research associate, UCL GOS Institute of Child Health
  • UCL GOS Institute of Child Health representative: Dr David Elliman, Consultant in Community Child Health, UCL GOS Institute of Child Health
  • RCPCH representative: Professor Paul Dimitri, Professor of Child Health & Consultant in Paediatric Endocrinology Vice President for Science & Research, The Royal College of Paediatrics & Child Health
  • Neonatologist committee member: Dr Hilary Wong, Consultant Neonatologist, Cambridge University Hospitals NHS Foundation Trust
  • Republic of Ireland representative: Prof Susan O’Connell, Consultant Endocrinologist, Children’s Health Ireland at Crumlin
  • Trainee representative:  Dr Kathryn Mullan, Paediatric Trainee
  • Trainee representative:  Dr Jessica Salkind, ST2 Neonatology, University College London Hospital
  • Patient/carer representative: Madeleine Wang
  • Committee member: Dr Simon Lenton, Consultant Community Paediatrician, Retired
  • Committee member: Dr Rob Negrine, Consultant Neonatologist, Birmingham Children’s Hospital
  • Committee member: Dr Hani Ayyash, Consultant Neurodevelopmental Paediatrician, Peterborough City Hospital
  • Committee member: Dr Soonie Patel, Consultant, Paediatric Oncology, Croydon University Hospital

The officers of the BPSU are responsible to the Scientific Committee, which in turn is accountable to the BPSU Partnership Board. The Partnership Board was established in 2014 and comprises representation from the three parent bodies of the BPSU, the RCPCH, UK Health Security Agency/Department of Health and Social Care, and the UCL GOS Institute of Child Health. This ensures a tripartite oversight of the strategic direction and operation of the BPSU.

Responsibilities of the Partnership Board

The Partnership Board is charged with the responsibility and authority to ensure that the BPSU is developed, managed and maintained in a manner that ensures it achieves its objective.

To discharge these responsibilities the Partnership Board will:

  • provide strategic direction to the BPSU by reviewing its priorities, progress, risks and future plans
  • appoint the Chair of the BPSU Scientific Committee
  • agree the terms of reference and membership of the Scientific Committee
  • oversee the financial arrangements of the Unit
  • reassure the host organisations annually that the activities of the BPSU comply with all relevant legal, regulatory, ethical requirements and associated conditions
  • ensure that the activities and outputs of the BPSU are widely disseminated to professional, policy and public audiences.

Membership

Membership of the Partnership Board is drawn from two senior representatives from each of the BPSU’s parent organisations. Members of the Governance Board may not also be members of the BPSU Scientific Committee.

The current membership of the BPSU Governance Board is:

  • Dr Helen Duncan, Programme Director, Child and Maternal Health Intelligence Network, Public Health England
  • Emily Arkell, Director of Research and Policy, Royal College of Paediatrics and Child Health
  • Dr Rachel Knowles, Clinical research fellow, UCL GOS Institute of Child Health
  • Professor Paul Dimitri, Royal College of Paediatrics and Child Health
  • Dr Helen Cross, UCL GOS Institute of Child Health