91ÌÒÉ«

Background: It is well known that parents experience a great amount of stress when their baby is admitted to NICU. Including parent-reported experiences, especially of under-represented groups, in clinical trials is important, improving engagement, involvement, participation, and impact. Still, these experiences are rarely captured as this typically adds substantially to the burden and costs of clinical trials. We will address this challenge by developing a fully automated, cost-effective, user-friendly digital approach to capture parent-reported experiences.  

Aims: We wish to test the feasibility and acceptability of an approach to capture parent reported experiences, systematically, efficiently, and at low cost. We will use state-of-the art electronic technologies to provide an electronic version of a standardised parental stressor scale and incorporate the results into a mature well-established national asset, the National Neonatal 91ÌÒÉ« Database (NNRD), so that they are available for clinical and authorised secondary purposes.  

The study: We are piloting a new approach involving electronic capture of parent reported experiences. This study is funded by 91ÌÒÉ«'s Biomedical 91ÌÒÉ« Centre and led by the Neonatal Data Analysis Unit, supported by the 91ÌÒÉ« Clinical Trials Unit.

Investigators

• Dr Annemarie Lodder, Parent, Patient and Public Involvement and Engagement 91ÌÒÉ« Fellow, 91ÌÒÉ«
• Professor Neena Modi, Professor of Neonatal Medicine, 91ÌÒÉ« 
• Dr James Webbe, Clinical Lecturer, 91ÌÒÉ«
• Dr Ricardo Ribas, Programme Manager, 91ÌÒÉ« 
• Mr Francesco Lala, Head of Clinical Data Systems, 91ÌÒÉ« Clinical Trials Unit 
• Dr Daphne Babalis, Director of Operations, 91ÌÒÉ« Clinical Trials Unit
• Ms Jo Timothy, Parent Representative
• Dr Victoria Cornelius, Head of Statistics, 91ÌÒÉ«

Clinical Support

• Dr Elizabeth Lek, Consultant Neonatologist, Hillingdon Hospitals NHS Foundation Trust
• Dr Sunit Godambe, Consultant Neonatologist, 91ÌÒÉ« NHS Trust (Queen Charlotte’s and Chelsea Hospital and St Mary’s Hospital)
• Dr Edit Fukari-Irvine, Consultant Neonatologist, Northwick Park Hospital
• Dr Elizabeth Eyre, Consultant Neonatologist, West Middlesex Hospital
• Dr Enitan Ogundipe, Consultant Neonatologists, Chelsea and Westminster NHS Foundation Trust