Adult Hydrocephalus Clinical Research Network (AHCRN) Update

Last week the Adult Hydrocephalus Clinical Research Network (AHCRN) met in Salt Lake City, Utah to discuss the progress and next steps for the network. The group welcomed three new sites into the network, including the first European site. The new sites are the University of Bristol headed by Dr. Richard Edwards, Columbia University Medical Center headed by Dr. Guy McKhann, and NYU Langone Medical Center headed by Dr. Jeffrey Wisoff. With the addition of these three sites, the AHCRN now has eight clinical sites and a data coordinating center.

This meeting was focused on analysis of the first 500 people in the registry including comparisons between patient care groups. These groups are adults who were diagnosed and treated as children (transition), adults with congenital hydrocephalus who were not treated as children (congenital), adults who acquired hydrocephalus and were treated as adults (acquired), and adults suspected of having idiopathic Normal Pressure Hydrocephalus (iNPH). We will share the results of this analysis once they are published.

The group also discussed ongoing studies focused on the causes of shunt failure in adults and also the effectiveness of endoscopic third ventriculostomy (ETV) treatment in adults. The second day of the meeting was focused on training for an upcoming randomized controlled trial which will determine the effectiveness of shunting for iNPH patients.

The AHCRN is chaired by Dr. Mark Hamilton, Director of the Adult Hydrocephalus Program at the University of Calgary. He is joined by an exceptionally dedicated group of neurosurgeons, neurologists, and a neuropsychologist.

Click here to learn more about the AHCRN.

 

6 Comments for : Adult Hydrocephalus Clinical Research Network (AHCRN) Update
    • Shelly sofaly
    • December 8, 2017
    Reply

    Sorry hailee- thats SCOPOLOMINE PATCHES

    • Debbie Little
    • December 6, 2017
    Reply

    I had a massive brain aneurysm and it was coiled and a shunt put in. I now have hydrsephylis and it is horrible. I am dizzy all the time and I have difficulty walking as well. I am struggling but I walk with a walker or cane. If you ever need someone to try something out that may help me at all, please don’t hesitate to contact me. I am so willing to try anything. I live in Tennessee. By UT HOSPITAL. Thank you so much in advance.

      • Shelly sofaly
      • December 8, 2017
      Reply

      Dear debbie , I will suggest the same to you as well- SCOPOLOMINE PATCHES- helps with nausea, dizziness , photosensitivity. Once u feel better than walking exercises for balance- use it or lose it- literally😇

    • Hailee
    • December 5, 2017
    Reply

    Hi my name is Hailee, I am a 20 your old female. I had the shunt placed 5 months ago, my doctors still have no idea why this happened to me and don’t really know much about causes. My doctors had to shave half of my hair off, and Intered through the top of my head, the side of my head, my neck and my stomach. I’ve still had some trouble with getting rid of all the head aches and they don’t have many more options for me to do.

      • Shelly sofaly
      • December 8, 2017
      Reply

      Dear hailee, have you tried scopoline patches? It really helped me during my healing. Once you get feeling better then u can practice walking exercises.

    • Dr. Norma Beck
    • November 17, 2017
    Reply

    Hello, I was diagnosed and treated last year (at the age of 85 !) for hydrocephalus. I am very grateful to my neurosurgeon who placed a shunt in my head and to all of you who are working on this condition. If I can do anything more than the contribution I sent to the HA to further research, please let me know.

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