Join the Hydrocephalus Patient Registry
What is HAPPIER?
HAPPIER 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!
- Create Your HA User Profile.
- View the Registry Consent Letter.
- Complete the First HAPPIER Survey.
- Stay Engaged through Your Dashboard.
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.
Email your questions to firstname.lastname@example.org.
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://www.hydroassoc.org/happier
I’m participating in the Hydrocephalus Patient Registry developed by @HydroAssoc! Join me in supporting research for #hydrocephalus. https://www.hydroassoc.org/happier
— Dr. Abhay Moghekar
The Johns Hopkins Hospital