Join the Hydrocephalus Patient Registry

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    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!

    1. Create Your HA User Profile.
    2. View the Registry Consent Letter.
    3. Complete the First HAPPIER Survey.
    4. Stay Engaged through Your Dashboard.

    By sharing your experiences, researchers have access to crucial data to make new discoveries. HAPPIER includes questions about the patient, their medical history, their current health, and the daily challenges of living with hydrocephalus. The surveys can be completed over multiple sessions. The information submitted is secure and stripped of any identifying information before it is accessed by the researchers, making records completely anonymous. (Read HA’s Privacy Policy) Once you are a part of the registry, you can login to the HA website and visit your custom dashboard which provides real-time reporting on data within the registry.

     

    REGISTER/LOGIN

     

    If you have problems logging in, email communications@hydroassoc.org.

    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.

    Questions?

    Email your questions to research@hydroassoc.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

    Information about the prevalence and incidence of hydrocephalus does not exist at either the regional or national level. We have only guesstimates. Support is needed for research initiatives that aim to better understand the distribution and determinants of this condition and to develop new therapies and other interventions.

    — Dr. Abhay Moghekar
    The Johns Hopkins Hospital