The SHARE-Hydrocephalus Study

Are you a parent of a child/young adult (aged 0-25y) with #Hydrocephalus ? ➡️ How has #COVID19 affected you & your child? ➡️ What information & support do you need? Please tell us! isurvey.soton.ac.uk/37378 @asdarlington @HarrysHAT5 @SHINEUKCharity #TheSHAREStudy 🌈

Delighted that Roisin has been awarded the @IntChildHealth Student Engagement Prize The prize is for Roisin's work to develop core outcomes & common data elements for paediatric #hydrocephalus. Her work will transform lives. @LeedsMedHealth @RCPCHtweets

Is your family affected by paediatric #Hydrocephalus? We want to understand the experiences of families after a diagnosis of paediatric hydrocephalus. Your voice matters! Get in touch on: roisin@harrys-hat.org #CoreOutcomes #Hydrocephalus

Families, clinicians & researchers! ▶️ What paediatric hydrocephalus outcomes matter to you most? ▶️ What information should researchers collect as part of all paediatric hydrocephalus studies? Your voice matters! Get in touch: roisin@harrys-hat.org #CoreOutcomes #Hydrocephalus

Help us get our new 'Hydrocephalus: What I wish I'd known' book to as many families as possible who need it. Pls share far & wide. To get a free copy email info@harrys-hat.org #Donations always welcome☺️#hydrocephalus @jayjayamohan @hine_hin @BBC_Hampshire @leahlockhart15

💬We want to hear from you! We want to know how children and young people (CYP) and their parents are coping now that COVID restrictions have been lifted Parents: forms.office.com/r/imtYUdJsnM CYP (aged 12-30):forms.office.com/r/XM8kgcGATL @unisouthampton @UniOfYork @CCLG_UK #TheSHAREStudy

Delighted to be a part of the UK's significant contribution to discussing paediatric #hydrocephalus at #ESPNCongress 2021 @ESPN_Society #neurosurgery Excellent work @RoisinMcNich @HazelSanghvi @Marinapitsika @afrolalou

When families find out their child has #hydrocephalus the consultant will often ask. Any questions? It's hard to know what to ask. We're looking for families to take part in an online Zoom to find out what questions to ask at diagnosis. Pls get in touch if you'd like to help.

What #research priorities would you like the @EANSonline CSF Task Force to address? We’re surveying our members, check your inbox! Not a member yet or didn't receive the survey? ➡️Email info@eans.org to join, complete our survey & get involved in future initiatives! All welcome

This is brilliant!

Different experiences of parents who took part in our survey to understand more about attitudes to screening in pregnancy and #hydrocephalus. Thank you to @HillNon @RHVolunteering students for conducting this vital research. Full report available. #HydrocephalusAwarenessWeek

During #HydrocephalusAwarenessWeek we wanted to reflect on our recent survey. Whilst congenital #hydrocephalus can be discovered during routine pregnancy scans, it can be missed. We wanted to find out what parents thought of the possibility of having a scan in later pregnancy.