The Institute of Health Visiting (IHV) are 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”, the IHV 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 at East Genomics. 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.
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 (opens in a new tab) 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.
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, Midwife and Regional Results Coordinator for the Generation Study, East Genomics
About Lauren's role
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 like Lauren 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.