Patient Studies

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Enrolling in clinical research trials is one way our community can become active participants in the quest to improve outcomes and find a cure for hydrocephalus. On this page you can learn about ongoing trials.


Clinical Trials


Genetic Causes of Congenital Hydrocephalus

Lead Investigator: Kristopher Kahle, MD, PhD
Location: Yale University, The Anlyan Center, 300 Cedar Street, Rm S311, New Haven, CT 06519
Recruiting: locally, regionally, and nationally
Eligibility: Families affected by congenital (developmental) hydrocephalus

Click here for more information


Hydrocephalus: Underlying Genes & Signaling (HUGS)

Enrollment is temporarily on HOLD

Lead Investigator: Timothy Vogel, MD
Location: Cincinnati Children’s Hospital Medical Center, 3333 Burnet Ave. Cincinnati, OH 45229
Recruiting: locally, regionally, and nationally
Eligibility: People of all ages with or without hydrocephalus


 

Advanced Imaging in Pediatric Hydrocephalus

Enrolling NOW at the Albert Einstein College of Medicine of Yeshiva University, Montefiore Medical Center

Lead Investigator: Mark Wagshul, PhD
Location: Gruss MRRC at Einstein College of Medicine, 1300 Morris Park Ave, Bronx, NY 10461
Eligibility: Children and Young Adults aged 6-25

Click here for more information


 

A Randomized Controlled Trial of Anterior versus Posterior Entry Site for CSF Shunt Insertion

Enrolling NOW at participating HCRN Centers

Lead Investigator: William Whitehead, MD, Texas Children’s Hospital
Location: HCRN Centers in United States and Canada
Eligibility: Children younger than 18 years of age and getting their first permanent shunt

Click here for more information


 

A Standardized Protocol to Reduce Cerebrospinal Fluid Shunt Infection

Enrolling NOW at participating HCRN Centers

Lead Investigator: John Kestle, MD, University of Utah
Location: HCRN Centers in United States and Canada
Eligibility: Children younger than 18 years of age


Ventricular Size Involvement in Neuropsychological Outcomes in Pediatric Hydrocephalus

Enrollment is now COMPLETE

Lead Investigator: Jay Riva-Cambrin, MD, University of Utah
Location: HCRN Centers in United States and Canada
Eligibility: Children 6-18 years of age

Click here for more information


 

Patient Registries


 

HAPPIER – HA Patient Powered Registry

Join the FIRST Hydrocephalus Patient Registry and help accelerate hydrocephalus research.

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.

Lead Investigator: Jenna Koschnitzky, PhD
Recruiting: Worldwide
Eligibility: Adults older than 18 years of age or parents/caregivers

Click here for more information about HAPPIER


 

AHCRN Core Data Project

Open to patients at participating AHCRN Centers

Lead Investigator: Mark Hamilton, MD, University of Calgary
Location: AHCRN Centers in United States and Canada
Eligibility: Adults older than 18 years of age

Click here for more information about the AHCRN


 

HCRN Core Data Project

Open to patients at participating HCRN Centers

Lead Investigator: Jay Riva-Cambrin, MD, University of Utah
Location: HCRN Centers in United States and Canada
Eligibility: Children younger than 18 years of age

Click here for more information

Click here for more information about the HCRN


 

HCRN Core Data Project: Characterizing Patient Populations within the HCRN: Shunt Infection Registry

Open to patients at participating HCRN Centers

Lead Investigator: Tamara Simon, MD, Seattle Children’s Hospital
Location: HCRN Centers in United States and Canada
Eligibility: Children younger than 18 years of age


 

HCRN Core Data Project: Characterizing Patient Populations within the HCRN: Endoscopic Third Ventriculostomy Registry

Open to patients at participating HCRN Centers

Lead Investigator: Abhaya Kulkarni, MD, The Hospital for Sick Children
Location: HCRN Centers in United States and Canada
Eligibility: Children younger than 18 years of age


To search for more hydrocephalus clinical trials visit clinicaltrials.gov


8 Comments for : Patient Studies
    • Phil
    • July 22, 2018
    Reply

    I was diagnosed with NPH when I was 10 years old. I was did not receive a shunt then and totally forgot about it. I was diagnosed again when I was 34. I did receive my first shunt then. It has been replaced a time or two since then. I am now 68 looking forward to 69 and 70 and so on.

    • barbara barrett
    • May 4, 2018
    Reply

    I live in Seattle, WA. Had a shunt placed when I was 76 years ago as a result of a diagnosis of NPH. I would like to know more about NPH. Would love ideas. Thanks

    • robin
    • March 15, 2018
    Reply

    Good Day

    I am looking to participate in any adult hydrocephalus studies in New York or New Jersey. I have a shunt and have NPH. I developed hydrocephalus at age 63.

    • Eileen F.
    • January 23, 2018
    Reply

    I was first diagnosed with NPH at the at age of 16 and I have not had any surgeries since. I can’t seem to find anyone that has a similar case like mine. If I can contribute to any local studies in CA I’ll be glad to sign up!

  1. Reply

    Good afternoon, i would also like to participate in adult studies if there are any in Atlanta,Ga. Thanks.

    • AUdrey Obach
    • August 23, 2016
    Reply

    My name is Audrey Obach. I was born with Hydrocephalus 58 years ago. When I was 8 months old I had to have surgery that saved my life. Can someone tell me what the Shunts were made of that long ago? It showed up on the head X Ray I had done 7 years ago when I broke my jaw.

    • Amy D. Bell
    • August 23, 2016
    Reply

    I was diagnosed with NPH at age 28—because it was found so late, I am unshunted. I am interested in possibly contributing to clinical studies, although I see from your website that there aren’t any clinical studies being conducted at the University of Texas Medical Branch in Houston, Texas and I wonder why?? I am unable to afford to travel to the east coast or Utah for clinical studies. I would ALSO like to be on the registry…..how can I go about doing this?

    Thank you for your attention.
    Sincerely yours,
    Amy D. Bell

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