Hydrocephalus Clinical Research Network

HCRN Investigators To Direct Panels at Upcoming Research Conference

paul — Fri, 18 May 2012 19:34:26 +0000

The Hydrocephalus Association announced details today about its upcoming conference on hydrocephalus research in partnership with Seattle Children’s, University of Utah and HCRN. The conference is entitled “Opportunities in Hydrocephalus Research: Pathways to Better Outcomes.” Several HCRN investigators are directing talks on topics including biomarkers, bio-engineering advances, surgical treatments and neurological outcomes. This research conference is unique in the fact that the research is presented in a patient centric fashion working from basic injury mechanisms, to diagnoses, treatments and then outcomes. Dr. Sam Browd, Dr. Pat McAllister and Paul Gross have developed the agenda which also includes a track on bio-engineering as well as basic science and clinical research. HCRN PI’s presenting include Dr. David Limbrick presenting on biomarkers in post hemorrhagic hydrocephalus, Dr. Jay Riva-Cambrin on critical assessment of new techniques and Dr. Abhaya Kulkarni on neurological outcomes and quality of life. Dr. Jack Walker will moderate the group discussion on treatment of hydrocephalus and Dr. John Kestle will provide a critical summary of the clinical aspects of the symposium. To learn more about the conference go to the Hydrocephalus Association announcement.

Semi-Annual Meeting of HCRN Includes Discussion of New ETV Study

john — Sun, 13 May 2012 03:56:57 +0000

The spring 2012 meeting of HCRN was held May 10/11 in Houston. The HCRN team welcomed Dawn Mancuso (CEO of HA) and Gavin Reed (Research Program Manager for HA) to the meeting. It was a great opportunity for the HA representatives and the HCRN members to get to know each other and their organizations in more detail.

The scientific discussions included a proposal by Dr Kulkarni for a new study on third ventriculostomy combined with choroid plexus coagulation. This procedure was developed by Dr B Warf in Uganda and is now catching on in some centers in North America. The study plan is being developed and will hopefully begin later this year.

Dr Whitehead’s study of ultrasound guided shunt placement was discussed. Data were analyzed on the position of the ventricular catheter and the location of the shunt. Fewer ventricular catheters ended up in a poor position using ultrasound.

The Core Data Project has accumulated enough patients to begin analysis of the factors leading to shunt failure or infection. These studies were described by Dr Riva-Cambrin and Dr Simon.

The NIH recently announced a K award to Dr D Limbrick. His study will analyze proteins in the CSF of premature children to see if they predict hydrocephalus. His protocol was reviewed. It is currently under IRB review and will launch soon.

Paul Gross presented data that he and Gavin Reed extracted from NIH RePORTER. Their analysis demonstrated the pattern of funding for hydrocephalus projects over the last 10 years and engendered a great deal of discussion and speculation.

The next HCRN meeting will be in the fall in Salt Lake City, but a number of HCRN members will be attending the July Hydrocephalus Research in Seattle.

Investigator Garners NIH Career Award

john — Thu, 19 Apr 2012 17:20:27 +0000

Congratulations to Dr. David Limbrick, HCRN Site PI at Washington University/St. Louis Children’s Hospital, who was just awarded a K23 Career Development Award by the National Institute of Neurological Disorders and Stroke (NINDS/NIH). David’s project, titled “CSF levels of L1CAM and amyloid precursor protein in post-hemorrhagic hydrocephalus of prematurity,” involves the creation of an HCRN-wide multi-institutional CSF bank to study post-hemorrhagic hydrocephalus (PHH). This project also draws on early work from David’s laboratory demonstrating specific alterations in the levels of the proteins L1CAM and APP in PHH. Over the next 5 years, David will focus on developing these and other proteins as biomarkers of PHH and PHH-related neurological injury. Ultimately, these biomarkers will be used to complement ventricular size measurements (e.g. CT or MRI) to improve the care and neurological outcomes of infants with PHH.

Dave’s award is the third NIH award for an HCRN investigator and second career award in the group and part of an important trend of receiving public funding for hydrocephalus research and the efforts of the network.

New HCRN Study Up and Running

john — Thu, 12 Apr 2012 21:53:42 +0000

The HCRN has successfully launched a new, potentially ground-breaking study across the Network. This study, titled Ventricular Involvement in Neuropsychological Outcomes in Pediatric Hydrocephalus, or VINOH for short, is funded by a Mentored Young Investigator award from the Hydrocephalus Association received by Dr. Jay Riva-Cambrin at Primary Children’s Medical Center in Salt Lake City, Utah. This study is looking into the short term implications hydrocephalus may have for school-aged patients concerning school performance, cognitive functioning, and social well-being. In addition, this study will be addressing the very important question of if and to what extent ventricle size impacts both, neuropsychological and clinical outcomes. Another exciting aspect of the VINOH study is the collaboration it has initiated across all HCRN Centers between the neurosurgical and neuropsychological staff, who are instrumental in the VINOH Study’s success. It is hoped that the collaboration begun between the care providers from these two different departments may continue in the future and serve to further improve outcomes for hydrocephalus patients. Congratulations to the Primary Children’s Team in getting this study going for the Network and hydrocephalus patients!

HCRN Simplifies Shunt Surgery Protocol

john — Sat, 28 Jan 2012 07:34:12 +0000

Last summer, HCRN reported a reduced infection rate using a standardized protocol for shunt surgery¹. Since those data went for analysis, we have almost doubled the number of patients on the protocol (now over 3000). We recently reviewed the additional information and our protocol and we are making some changes. The new protocol will be shorter and simpler (which may further enhance compliance). Some steps have been removed and others added. We hope to analyze the new approach in about a year and see if we have further reduced shunt infection.

¹ Kestle J, Riva-Cambrin J, Wellons JC 3rd, Kulkarni AV, Whitehead WE, Walker ML, Oakes JM, Luerssen TG, Simon TD, Holubkov, for the Hydrocephalus Clinical Research Network: A standardized protocol to reduce cerebrospinal fluid shunt infection: The HCRN Quality Improvement Initiative. J Neurosurg Pediatr 8(1): 22-29

Summary of Semiannual HCRN Meeting

john — Tue, 06 Dec 2011 04:19:29 +0000

The semiannual HCRN meeting was recently held in Salt Lake City November 9th and 10th. For the first time we were joined by Gavin Reed who is the research associate at the Hydrocephalus Association. This meeting gave Gavin the opportunity to learn about HCRN and its studies and to represent HA at the meeting as part of our expanding partnership. The Core data project has now accumulated over 3000 events and plans for several analyses from this database were discussed. Several new projects were also considered. Chevis Shannon from Birmingham, having completed her PhD, is now on the Neurosurgery faculty — as such she presented an idea to study radiation exposure in IVH children. She was encouraged to develop a more detailed proposal for this interesting idea.

The infection protocol data were reviewed and possible changes to the protocol were discussed pending further analysis. Progress on Dr Riva-Cambrin’s “VINOH” study was reviewed. This study is funded by a Mentored Young Investigator award from the Hydrocephalus Association. The study examines neuropsychological outcomes in children with hydrocephalus. The collaboration with neuropsychologists is exciting and now a number of centers are entering patients. Finally the status of Dr. Jay Wellons’ study of Shunting Outcomes in Post Hemorrhagic Hydrocephalus and its pending NIH application was discussed. Excellent progress is being made and the grant will be reviewed in the New Year.

Plans are under way for the spring meeting in Houston.

HCRN Co-Founder Appointed to NINDS Advisory Council

john — Wed, 28 Sep 2011 06:18:21 +0000

Paul Gross, Chairman of Hydrocephalus Association’s (HA) Board of Directors, and, as you all know, a founding partner of the Hydrocephalus Clinical ResearchNetwork (HCRN), has been selected to join the National Advisory Neurological Disorders and Stroke Council, the main advisory panel to the National Institute of Neurological Disorders and Stroke (NINDS).

NINDS, a component of the National Institutes of Health (NIH), is the nation’s primary supporter of basic, translational and clinical research on the brain and nervous system. The NINDS Advisory Council is composed of physicians, scientists and representatives of the public, who review applications from scientists seeking support through government grants for biomedical research on disorders of the brain and nervous system. NINDS Advisory Council members also advise the NIH on research program planning and priorities.

“In just a few years, Mr. Gross has done a remarkable job of engaging engineers, scientists and clinicians in plans to develop research that will lead to better treatment for people with hydrocephalus,” said Story Landis, Ph.D., Director of the NIH National Institute of Neurological Disorders and Stroke (NINDS). “I am delighted that he will be a member of the NINDS Advisory Council and look forward to his participation.”

I am delighted as well and offer sincere congratulations to Paul on this appointment. Paul brings his entrepreneurial perspective, successful business experience, and a deep, passionate commitment to finding answers for people living with hydrocephalus.

Happy 5th Anniversary HCRN!

john — Mon, 12 Sep 2011 21:54:02 +0000

While everyone has been busy working away on HCRN studies and grant writing, HCRN’s 5th birthday quietly slipped by last month. This is a significant milestone that we should all be proud of. Our first meeting in the Neurosurgical office in Salt Lake was a small group, but we had big plans. Although optimistic, I wasn’t sure if we would succeed, so I am delighted that we continue to work together, grow and be productive five years down the road.

There have been many people who have worked hard to make this happen and keep it going. I would like to thank Paul Gross for his support and guidance, John Smith for his planning and writing abilities, the Executive Committee (Jim Drake, Tom Luerssen, Jerry Oakes, Jack Walker) for their counsel and guidance, and the investigators for enthusiastically supporting this endeavor and entrusting a significant portion of their academic growth to this infrastructure. Additionally of course, we wouldn’t be anywhere without our outstanding team of coordinators and our expert colleagues at the Data Coordinating Center. Last but not least, thank you to our donors who have made HCRN possible.

Thank you to everyone for your cooperative approach and hard work.

Happy 5th Birthday!

HCRN Investigators Visit NIH

john — Mon, 15 Aug 2011 04:18:35 +0000

HCRN investigators Wellons, Kestle, Holubkov, Riva Cambrin and Limbrick recently met with the Clinical Trials group at NINDS (NIH). The purpose of the meeting was to discuss plans for a randomized trial on the management of hydrocephalus in premature infants with intraventricular hemorrhage. The PI for the trial will be Dr Jay Wellons, from the Birmingham Alabama center. The HCRN team discussed the study plan with the staff at NINDS and received feedback and suggestions.

The meeting was great exposure for HCRN at the NIH and helped them refine the study plan. The goal is to apply for NIH funding for the trial later this year

HCRN Infection Study in the News

paul — Thu, 07 Jul 2011 04:26:48 +0000

Dr. Kestle’s research on the HCRN Shunt Protocol was published in the Journal of Neurosurgery: Pediatrics this month. Because of the potential impact of the study to reduce infection rates, the Journal has made the link to the article public. You can read the publication it is entirety here — A standardized protocol to reduce cerebrospinal fluid shunt infection: The Hydrocephalus Clinical Research Network Quality Improvement Initiative.

In addition to being published in the Journal of Neurosurgery, Dr. Kestle was interviewed by Medscape.com which published an article about the findings entitled Surgical Protocol Significantly Cuts Shunt Infection Rate This site has much broader readership in the medical community than just neurosurgeons so it is a very positive step in creating awareness for HCRN, its research and the protocol. The hope is that more hospitals will adopt the protocol and help decrease the shunt infection rate worldwide.