13th March 2026
We are delighted to be working with Genomics England to support health visitors’ awareness of the Generation Study – a research study run in partnership with NHS England that is testing newborn babies for more than 200 genetic conditions. This study has the potential to change how newborn screening is delivered in the future and enable earlier access to diagnosis and treatment for babies with rare and treatable conditions. As part of this project, titled “Realising the potential health visiting teams have to support babies, children and families participating in the Generation Study”, we have created a brand-new infographic to provide a short resource for all members of health visiting teams which describes:
- what the Generation Study is
- how it differs from NHS newborn blood spot screening
- what types of results babies can receive
- how health visitors can support families
- how to contact Regional Results Coordinators for the Generation Study across England.
The idea behind this infographic came from Lauren Capacchione, Midwife and Regional Results Coordinator for the Generation Study in the East Genomic Medicine Service (GMS). Lauren, the iHV and Genomics England worked together with health visiting teams in the East GMS to develop this, and we are really grateful for those health visiting teams’ support.
We are delighted to be able to share the final infographic, which is a professional-facing resource for health visitors and members of health visiting teams.
While this resource is not for patients, Genomics England has a range of resources for prospective participants including translated versions, and all have been subject to ethical approval. These can be accessed at Genomics England or through local teams delivering the study. See here for a list of participating hospitals.
We hope you will find the infographic helpful and suggest using it in a number of ways to inform your practice, including:
- as an aide memoire about the Generation Study, which is something many parents across England will be offered participation to
- to enable you to explain to a family the results process for babies participating
- to use the link to the Generation Study website to help you find out more
- to contact one of the Regional Results Coordinators for the Generation Study, perhaps because one of the families in your care has a baby with a suspected condition.
When a family receives a suspected condition result through the Generation Study, the Regional Result Coordinator (RRC) is the professional who connects them to the right hospital specialist, ensuring the family is informed about the suspected result and that the next steps toward diagnosis are arranged promptly. RRCs provide clear, timely guidance to help health visiting teams know exactly what to do when queries arise, offering reassurance and support during what can be an uncertain time for families. RRCs are always happy to be contacted by health visitors; if you are unsure which RRC to contact because of geographical boundaries, you can still contact any listed on the infographic and they will help guide you to the correct person.
Sally Shillaker, Practice Development Lead – Genomics, Institute of Health Visiting, says:
I really like this infographic! It provides the information we need to be clear about the Generation study whether we are working in an area where the Generation study is recruiting or not.
It’s quite possible that for those of us where our local hospital is not recruiting, we will have a family transfer-in to our area who is a participant, and this infographic will be really helpful to remind us about it.
Sally Shillaker, iHV Practice Development Lead for Genomics
Lauren Capacchione, Midwife and Regional Results Coordinator for the Generation Study in East Genomic Medicine Service (GMS), says:
This infographic gives health visitors a simple, clear, and quick way to contact their Regional Results Coordinator whenever a Generation Study query arises. It’s designed as a just‑in‑time resource, helping professionals know exactly who to reach out to, without delay, so families receive timely information and seamless support. By making the pathway clearer, we strengthen collaboration between teams and help ensure families experience responsive, confident and exemplar care.
Lauren Capacchione, Regional Results Co-ordinator -The Generation Study,
Senior Midwife & PMA, East Genomic Medicine Service Alliance
Amanda Pichini, Clinical Director, Genomics England, says:
We’re really pleased to have supported the development of this infographic. Health visiting teams play a pivotal role in helping families understand the Generation Study, and having clear, accessible information at their fingertips makes those conversations easier and provides confidence. By creating this resource together, we’re strengthening the partnership between national teams and local services and making sure families receive accurate, timely and reassuring information throughout their journey.
Current data about the Generation Study (provided by Genomics England 10/03/2026)
| Aspect | Data |
| Total number of participants | 49,472 |
| Samples taken | 37,203 |
| Condition suspected results | 123 |
| No condition suspected results | 33,299 |
| Hospitals in England recruiting | 75 |
Sally Shillaker, Practice Development Lead – Genomics, Institute of Health Visiting
