A National Registry Would Shed Life-Saving Light on Hydrocephalus

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Congressional Hydrocephalus Caucus Briefing

Dr. Abhay Moghekar speaks at the briefing for the Congressional Pediatric and Adult Hydrocephalus Caucus

Patients nationwide living with hydrocephalus wonder constantly—Am I alone, how many other people have hydrocephalus? How many are able to finish college? Get a job? How many are able to drive?

Hydrocephalus is caused by the accumulation of an abnormal amount of cerebrospinal fluid (CSF within cavities in the brain called ventricles.  As the CSF builds up, it causes the ventricles to enlarge and the pressure inside the head to increase.  There is no cure, and the only treatment is brain surgery, in which a shunt is implanted in the brain to drain excess CSF.  Shunts, however, have the highest rate of failure of any implanted medical device.  As a result, the approximately one million individuals living with hydrocephalus often undergo dozens of brain surgeries over the course of their lives in order to manage their condition.

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. Innovations in genetics, molecular and computational biology, and other technological advances in basic research are rapidly evolving; however, translating this progress into clinical research and securing governmental or private funding in early stages remains challenging. Some of these challenges can be addressed efficiently through a systematic collection of clinical, genetic, and biologic data in the form of longitudinal patient registries and other coordinated data sources.

With regards to the latter, the Hydrocephalus Association is working to fill this gaping hole in the data.  The Association has established the Hydrocephalus Clinical Research Network (HCRN) and the Adult Hydrocephalus Clinical Research Network (AHCRN) to collect data systematically from about 15 and 10 academic centers respectively. They have set a research agenda and have already contributed to a better understanding of certain interventions that work well and are being adopted as standard of care for our patients.

However the vast majority of patients still don’t have access to these academic centers. When Nixon launched the “War on Cancer” in 1971 there were similar challenges – namely, a lack of reliable data on incidence and prevalence. However the establishment of The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute, greatly facilitated the establishment of nationwide registries that in turn helped advance the cancer research agenda. We need something similar for hydrocephalus –

Two pieces of legislation would help pave the way for a hydrocephalus registry.  First, the Advancing Research for Hydrocephalus Act (H.R. 2313), championed by Rep. Chris Smith (R-NJ), would create a registry to track the prevalence and incidence of hydrocephalus on a national scale. Congress must find an avenue to advance this important legislation.

Second, the 21st Century Cures Initiative in Congress includes a provision to create a national registry for neurological conditions within the Centers for Disease Control and Prevention (CDC).  Through this program, the CDC would create national registries that track prevalence and incidence statistics for a variety of neurological conditions.  This provision should be included in a final package as long as eligibility for hydrocephalus as a condition to be tracked is equitable to that of other neurological conditions.

One day in the near future, I hope individuals living with hydrocephalus no longer feel isolated and as though there are no answers to their questions.  I hope they are able to locate patients facing similar situations, share their stories, and connect with life-saving clinical research.  To bring these hopes to fruition, it is time for us to collectively endeavor to make a hydrocephalus registry a reality.

Updated from a speech given by Dr. Abhay Moghekar, Research Director of the Cerebral Fluid Center in the Department of Neurology at Johns Hopkins Medicine and a member of our Medical Advisory Board, at the briefing of the Congressional Pediatric and Adult Hydrocephalus Caucus in May 2016.

Get Involved!

  • Congressional passage of the 21st Century Cures legislation is one way to make that happen. Join the Research!America #CuresNOW campaign. Share your story with your member of Congress. Encourage them to pass this important piece of legislation. JOIN NOW
  • Attend the Rally for Medical Research on September  22nd in Washington, DC, and share your story on Capitol Hill. LEARN MORE
  • Write your Representative and ask them to co-sponsor H.R.2313 Advancing Research for Hydrocephalus Act. If they have signed on as a co-sponsor, write them and thank them! TAKE ACTION
4 Comments for : A National Registry Would Shed Life-Saving Light on Hydrocephalus
    • David Wildman
    • September 9, 2016

    I have Hydrocephalus , since !974 My first shunt operation was at The University Of Chicago. I have had to have sixty nine revision.

    • Audrey Obach
    • August 29, 2016

    My name is Audrey Obach. When I was born I had hydrocephalus. I had a shunt surgery at 8 mos of age. I have never had a revision and I am 58 yrs old now. I had regular EEG’s when I was younger but no follow up since I became a teenager. |For a time I had epilepsy,grand mal siezures for which I was on Phenobarb but, by the time I was a teenager I had no more.

  1. Reply

    I am 52 years old and have hydrocephalus. It was diagnosed when I was 28 and it is NOT shunted (as the neurosurgeons said that it would NOT be a good idea)—-Are there any promising cures yet for this?

    • Sarah Clark
    • August 9, 2016

    Diagnosed in 1976 at the age of 10. Treated with 2 peritoneal shunts. Mild ADD, mild siezure disorder, undercontrol with meds.

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