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.