HA Partners with HCRN to Promote Groundbreaking Clinical Research
Posted by tom on June 4, 2012 · 2 Comments
By Dawn Mancuso, FASAE, CAE, Hydrocephalus Association CEO
I am pleased to announce that the Hydrocephalus Association (HA) and the Hydrocephalus Clinical Research Network (HCRN) have signed a partnership agreement that will ensure the continuation of HCRN’s hydrocephalus research.
We are honored to be partnered with the first and, so far, only clinical research network dealing with hydrocephalus. In just a few short years, this group of committed doctors has already improved the treatment of hydrocephalus by significantly reducing infection rates, one of the most difficult and dangerous complications faced by our community.
The Hydrocephalus Clinical Research Network (HCRN) is a collaborative research effort of 14 doctors at seven institutions in North America with a Data Coordinating Center at the University of Utah, and seven Clinical sites at Primary Children’s Medical Center in Salt Lake City, the Children’s Hospital of Alabama in Birmingham, Pittsburgh Children’s Hospital, St. Louis Children’s Hospital, Seattle Children’s Hospital, Texas Children’s Hospital in Houston and The Hospital for Sick Children in Toronto . HCRN’s mission is to dramatically improve the lives of kids suffering from hydrocephalus by conducting important and field-changing, multi-center clinical research
The partnership expands HA’s Research Initiative beyond our young investigator and basic science awards, and adds a growing body of research intended to advance the treatment of hydrocephalus. HCRN conducts multiple simultaneous studies, and maintains a centralized database of patient information, so it is able to advance research more quickly than traditional clinical studies. HA will promote HCRN’s research and funding needs to its members and is committed to providing substantial funding support to the HCRN – over $1 million over the next three years.
HCRN receives support from a variety of organizations including private donors, participating hospitals, foundations and the National Institutes of Health. While HCRN will always seek public funding for its studies and scientists’ careers, the partnership will allow HCRN to continue its promising work with more assurance of continued support. “HA provides an invaluable service to the patient population we study” said Dr. John Kestle, Chairman of HCRN. “We believe this partnership will greatly enhance our investigations into the most important problems for those affected by the condition.”
As part of this agreement, Dr. Kestle will join the board of directors of HA and the organizations will work together to promote HCRN’s research as part of our goal to one day realize the HA’s mission and find a cure for hydrocephalus.
Click here to read out official press release.
Help! I read all the information on research and “Latest News” and “Support Groups”. What I came on line looking for is a doctor that can help me with my son who is one of the older children with secondary hydrocephalus. He was first shunted at 3 months old! When I say older child I mean he is now 39 years old and in horrific pain taking over 300 pain killers a month and many other drugs to no avail. (This week they upped the strength of the drugs). I am feeling very desparate to help him and don’t know where to turn. In Phoenix Arizona the doctors are many that he has seen, several have said (take him home and make him comfortable) Come on! He is 39 years old!!!. we have fought long and hard to keep him going. With that kind of statement how do we keep him emotionally sane??? He has had 55 revisions, has had up to 15 in one year and the pain/pressure never stops. Is this what all the young smiling faces have to look forward to as adults because there is no cure nor any day without pain~ Any help to find a doctor that can help would be appreciated. He can travel if needed.
After reading the above post, I decided to post my comment. I am also “older”—my hydrocephalus was discovered when I was 28 years old and I am now 48. The three neurosurgeons that I went to told me that it was “too late” to shunt it….and that the complications from surgery would probably be too severe to attempt to ‘install’ a shunt now. I don’t have pain…but, I DO have problems…emotional, psychiatric problems. it’s difficult not only on me, but, also on my mother who is 67 years old, widowed and retired. I am recently had to move back in with her and it is NOT an ideal situation, but, was better than being homeless…..which was my next step. is there ANYONE out there who can help?