We are a team of researchers funded by the NIHR Oxford Biomedical Research Centre (Oxford BRC), carrying out research on a rare genetic disease called Surfactant Protein Deficiency. Babies with this disease become very ill and often need to be admitted to intensive care units in hospitals (NICUs). Some babies survive through to childhood, but sadly some do not. Currently there is no cure for either the most severe or the milder forms of this condition. Our research aims to set up a clinical trial for these babies. To support this, we want to find out how many babies are born on average each year that would be suitable for a first trial, using an existing anonymous research database for babies born between 2010 and 2022, and supplementing this with genetic data from babies, as available from the NICUs.
We would like to ask parents and carers for their views on the level of consent we should request, if any, for access to existing genetic information from babies.
This project will help us set up a clinical trial later, for babies with Surfactant Protein Deficiencies.
Are you someone with experience of one or both of the following:
• having a baby in intensive care?
• investigations such as genetic testing to determine a diagnosis for your baby?
We particularly encourage applications from parents of babies who underwent genetic testing to identify a possible cause for symptoms they experienced at or soon after birth, as well as parents who have experienced the loss of an infant.
Participation will involve one-to-one interviews with a researcher online (one per participant, approximately one hour).
If the outcome of interviews is that parent consent is required, those who express interest in further involvement will be invited to read and comment on a parent information sheet and consent form. All involvement is online.
We can pay you £25 per hour for your time plus any expenses
End of October 2023
University of Oxford, Radcliffe Dept of Medicine, Nuffield Division of Clinical Lab Sciences