Dr Rachel Knowles is a paediatric epidemiologist and consultant in public health medicine at Great Ormond Street Institute of Child Health, University College London and is a Clinical Adviser to the national Newborn Blood Spot Screening programme at NHS England. Her research has focused on newborn screening and outcomes for children with rare and congenital conditions and she often uses large routinely collected datasets in her work. Rachel also works for the Medical Research Council (MRC part of UKRI) where she is Lead for Clinical Research Policy, Ethics and Governance. She previously represented MRC on the Steering Group of Understanding Patient Data and was an expert member of Bloomsbury Research Ethics Committee. Rachel currently sits on the Partnership Board of the British Paediatric Surveillance Unit, based at the Royal College of Paediatrics and Child Health, which supports paediatric rare disease surveillance studies across the UK and Republic of Ireland.