Are you a parent with a child under 5? Would you like to be a parent advisor to help research into newborn screening?

A new type of newborn screening, that looks at the genomes of babies to identify a number of rare conditions, is going to be piloted (tested) in a number of hospitals in England. The pilot is called the Generation Study (www.generationstudy.co.uk/). The pilot will be assessed by an independent research team. The views of parents and healthcare professionals will be captured, and the costs and benefits to parents and the NHS will be measured (this is known as an ‘evaluation’).

We would like to recruit a small group of parents (based in England) who are interested in shaping the work we will do, and who are confident about sharing their views but respectful of others especially when dealing with sensitive topics. Members of the group should be prepared to keep information confidential. Discussions might include your own experiences of newborn screening, giving feedback on draft surveys, and suggestions for sharing the findings across different communities.

The group will meet 4 times between the start of May 2024 and December 2025, online (e.g. on zoom). There may be materials to read ahead of meetings. Members of the advisory group will be paid for their time.

TO APPLY OR FOR MORE INFORMATION PLEASE USE THIS LINK
https://redcap.idhs.ucl.ac.uk/surveys/?s=CJHPYPMKPCHJ8PH8

OR USE THE QR CODE BELOW

The evaluation is led by researchers at UCL Great Ormond Street Institute for Child Health and Great Ormond Street Hospital. For further information please contact Amy Hunter ([email protected]) or Kerry Leeson-Beevers ([email protected]).
If we have more applicants than places on the group, we will select participants who provide a mix of experiences and backgrounds.

PLEASE NOTE: SHORTLISTED APPLICANTS WILL BE INVITED TO TAKE PART IN A SHORT INFORMAL CHAT WITH ONE OF THE RESEARCH TEAM