Hydrocephalus Research Guild — Formed in 2006 to raise awareness of hydrocephalus and funds for research at Children’s Hospital. Since the formation of the guild, more than $400,000 has been raised for hydrocephalus research. The guild has funded Dr. Sam Browd’s initial particpation in the Hydrocephalus Clinical Research Network in addition to influencing the recruiting of bench scientists Dr. William Dobyns and Dr. Kathy Millen to coordinate the research on hydrocephalus at Seattle Children’s Research Institute.
|Proteomics of Cerebral Spinal Fluid (CSF) in Hydrocephalus Research – Dr. Anthony Avellino, Assistant Professor of Neurological Surgery at Seattle Children’s Hospital and Regional Medical Center and the University of Washington|
Hydrocephalus Clinical Research Network (HCRN) HCRN was formed in 2006 based on a business plan collaboration between the University of Washington Executive MBA program and Paul Gross. After performing a strategic analysis of how to best advance the state of hydrocephalus research, the group decided on a clinical research network as the best way to improve outcomes from kids suffering from hydrocephalus. Exec MBA lead, John L. Smith and Paul Gross, partnered with Dr. John Kestle who is the chief of pediatric neurosurgery at Primary Children’s Hospital at the University of Utah and the recognized leader in clinical research for hydrocephalus, to form the Hydrocephalus Clinical Research Network. The first meeting of HCRN occured in August of 2006 and has since grown to include five centers adding SickKids in Toronto, Children’s Hospital of Alabamam Texas Children’s Hospital and most recently Seattle Children’s Hospital with Dr. Browd in the role of principal investigator. The network conducts studies across it combined patient population to increase the speed at which important clinical research questions can be answered to improve the treatment of hydrocephalus.
http://www.ninds.nih.gov – National Institute of Neurological Disorders and Stroke – Information on Hydrocephalus and research
http://www.med.uvm.edu/madisfund/hydro_faq/hydro_faq.html – Madi’s Fund in conjuction with University of Vermont Medical School – Funds research on hydrocephalus
http://www.stars-kids.org/main.html – STARS-kids is a non-profit organization that raises awareness and funds for research to advance shunt technology and its effect on the brain.
http://www.cerebra.org.uk New treatment for Hydrocephalus in premature infants
One of the major complications of a premature birth is bleeding into the ventricles (chambers) of the brain (haemorrhages). Large haemorrhages cause progressive enlargement of the ventricles and head. Of children with this condition, 60% develop cerebral palsy and 30% have major disabilities. The only treatment is life-long dependence on a ‘shunt’, a surgically placed tube and valve system, which takes excess fluid to the abdomen.
The University of Bristol has developed a new treatment which aims to remove as much of the blood and toxic substances, as possible, from the ventricular system before hydrocephalus becomes irreversible. DRIFT (Drainage, Irrigation and Fibrinolytic Therapy) was first developed at the University of Bristol and will be the treatment used in a trial involving infants of 4 weeks or less. The trials will be carried out at South Mead Hospital, Bristol and Queen Mother’s Hospital, Glasgow and will look at whether neurological development can be improved, as well as shunt dependence reduced, through the use of this treatment.