The HAPPIER Registry Paper Is Now Published

We’re excited to share that the Hydrocephalus Association Patient-Powered Interactive Engagement Registry (HAPPIER) has been officially published in a scientific journal! This is a huge milestone in making sure that the voices of people living with hydrocephalus—and their caregivers—are heard in research.

Click here to view the published paper.

What Is HAPPIER?

HAPPIER is an online patient registry created by the Hydrocephalus Association to collect information directly from people living with hydrocephalus and their caregivers. It helps researchers understand what daily life is like with this condition—from symptoms and surgeries to challenges with movement, learning, and emotional health.

The goal is to improve care, treatment, and research by making sure the patient perspective is front and center.

What Did We Learn?

In our newly published paper, we highlight data from the first 691 participants who joined HAPPIER. Watch this video that summarizes our findings:

©2025 Jakopin et al. This work is published by Dove Medical Press Limited, and licensed under Creative Commons Attribution – Non Commercial (unported, v3.0) License.

Help Shape the Future of HAPPIER

Participating in research is incredibly important—and thanks to you, the HAPPIER Registry is growing and evolving. We’re currently enhancing the platform to better reflect the needs and voices of the hydrocephalus community. Once the new version launches, participants will be able to more easily share their experiences, update their information, and contribute to studies that aim to:

• Shape the future of hydrocephalus research
• Improve the understanding of daily life with hydrocephalus
• Guide scientists, doctors, and policymakers
• Advocate for patient and caregiver voices to be at the center of care decisions

No matter your age, diagnosis, or where you live, you can participate. Click here to join the registry.

Thank YOU!

We want to extend a heartfelt thank you to every individual and family who has participated in HAPPIER so far and those that are joining now. Your willingness to share your stories, experiences, and challenges has made this publication—and this entire registry—possible. Every data point represents a real person, and together, you are helping to paint a fuller, more accurate picture of what it means to live with hydrocephalus. Your voice is not only being heard—it’s driving change.

This is your registry, and we’re honored to have your trust as we work together to improve care, research, and understanding for the entire hydrocephalus community. Together, we can create a future where the experiences of people with hydrocephalus lead to better care, better research, and better lives.

Thank you for being part of this incredible community 🩵