Join HAPPIER – The HA Patient Powered Interactive Engagement Registry to accelerate hydrocephalus research.
What is the Patient Registry?
The Patient Registry is an online database created for our community to share your experience living with hydrocephalus. By sharing your experience, you’re giving researchers access to important data that can lead to discoveries in underlying causes of the condition, intervention strategies for preventing the condition, improvements in diagnosis, and/or alternative treatments. You’re also informing the work of the Hydrocephalus Association in developing programs and resources to support you with living daily with hydrocephalus. Discoveries in any of these areas ultimately leads to improved outcomes for patients.
Whether you are living with hydrocephalus or provide care for someone with hydrocephalus, we welcome you to join our quickly growing community and share your experiences. Your contributions are meaningful. Together, we will move hydrocephalus research forward as well as improve support services and resources for our community.
Joining HAPPIER is EASY!
1. Create Your HA User Profile.
2. View the Registry Consent Letter.
3. Complete the First HAPPIER Survey.
4. Stay Engaged through Your Dashboard.
Already a member? Click here to log in
If you have problems logging in, email email@example.com.
Who is Eligible?
- Anyone who has been diagnosed with hydrocephalus who is over the age of 18 can join HAPPIER.
- Anyone who provides or has provided care for someone with hydrocephalus can join HAPPIER.
Invite Others to Join the Hydrocephalus Patient Registry!
Please extend an invitation on your Facebook or Twitter page for other individuals living with hydrocephalus and caregivers to join you in helping advance hydrocephalus research. Here are some sample tweets and posts you can use.
Be part of a community that’s helping advance #hydrocephalus research. Join me on HAPPIER – the Hydrocephalus Patient Registry! #lifewithhydrocephalus https://secure2.convio.net/hydro/site/SPageNavigator/Patient_Registry.html
I’m participating in the Patient Registry @HydroAssoc! Join me in supporting research for #hydrocephalus. https://secure2.convio.net/hydro/site/SPageNavigator/Patient_Registry.html
Discover how our community can become active participants in the quest to improve outcomes and find a cure for hydrocephalus and learn about ongoing trials.
WALK to End Hydrocephalus
Join us as we WALK to End Hydrocephalus! We have inspirational walk/run events across the country. Find an event near you and help raise funds and awareness.