HCRN Update: Shunt Outcomes in Post Hemorrhagic Hydrocephalus

by Ashly Westrick, HA Research Manager

This Research blog series is dedicated to highlighting the current studies of the Hydrocephalus Clinical Research Network (HCRN). The HCRN is a collaborative research network of seven pediatric children’s hospitals conducting important research on hydrocephalus. We hope you enjoy reading about the important work the HCRN is conducting.

We begin our series by talking with John Wellons, III, M.D., M.S.P.H. Dr. Wellons is Professor of Neurological Surgery, Vanderbilt University Medical Center and Chief of Pediatric Neurosurgery, Monroe Carrel Jr. Children’s Hospital at Vanderbilt.
He is the principal investigator for the Shunt Outcomes in Post Hemorrhagic Hydrocephalus (SOPHH) study for the HCRN, which is working to standardize the management of children with post hemorrhagic hydrocephalus of prematurity.

HA: How did you get involved with HCRN?

WELLONS: I became involved with the Hydrocephalus Clinic Research Network during my time at Children’s Hospital of Alabama. We were asked to be a member of the founding four, so to speak, and I have stayed actively involved since that time. I am very excited to bring it to Vanderbilt.

HA: What do you believe to be the significance of your research?

WELLONS: I think the research that we do through the Hydrocephalus Clinic Research Network is extraordinarily important to the field of hydrocephalus and is designed specifically to improve the diagnosis, management, and surgical treatment of these children. In terms of the SOPHH study line, I believe that standardizing the way that we manage these children will allow us to make better decisions and determine which interventions will ultimately prove to have better long-term outcomes.

HA: What impact do you believe HCRN has on the patient population?

WELLONS: There is good data that shows that the number of children enrolled in clinical trials for hydrocephalus has increased tenfold since the year that the HCRN began. This allows more rapid data collection and analysis so that this information can be utilized in further prospective analytical studies as we design better ways to care for the children.

The SOPHH study line is specifically designed to standardize the way children with post hemorrhagic hydrocephalus of prematurity are managed. We are looking at ways to reduce the rate of converting temporary surgical procedures, such as reservoir placement or ventricular subgaleal shunts, to “permanent” shunts, thereby reducing the total number of surgical interventions for an infant. We are also evaluating the neuropsychological outcomes at 18-22 months in children who have had either procedure using neuropsychological testing parameters for children of this age.

We will see patients in clinic who will have grade III or grade IV intraventricular hemorrhage (IVH) in one room and when you walk in the door, they give you a “Hi Dr. Wellons, how are you doing? I made A’s and B’s on my last report card.” Then you will walk in the next room and a patient with Grade III or Grade IV IVH will be wheelchair bound and non-communicative. The work that we are doing is designed to determine best strategies to move patients from the likelihood of being in Room 2 into Room 1. I believe that this is one of the most important things that we are doing in the Network and that I have done in my career.

HA: What could your research mean for the hydrocephalus research community in furthering the knowledge base and what could it mean for translation to improved patient diagnostics, treatments, or potentially a cure?

WELLONS: I would love to see the rate of intraventricular hemorrhagic of prematurity be reduced on the front end. There is a growing body of experience and knowledge that suggests that there may be an ability to reduce this. If we can reduce the amount of intraventricular hemorrhage, then we can reduce the amount of post hemorrhagic hydrocephalus. I believe that if we can hit it in the front and hit it in the middle and hit it on the end, we can really work on improving outcomes. We were extraordinarily fortunate to have startup funds through philanthropy and to continue with that philanthropic drive. We were also able to get a Challenge Grant from the NIH and have several of our investigators that are funded either through the NIH with training awards or through the Hydrocephalus Association with Young Investigator Grants. We have written several other grants and submitted them to the National Institute of Neurological Disorders and Stroke (NINDS). We have been scored and we have been invited and have spoken at the NINDS on our study lines. Currently the budget for the NIH is under a part of the sequestration. This has academic medical centers quite concerned, and it should. The science that we do is dependent on NIH funding a great deal. As we continue to move forward with these important lines of research, we need to further partner with our philanthropic collaborators as well as this wonderful arrangement with the Hydrocephalus Association in order to continue these extraordinarily important lines of research.

The Hydrocephalus Clinical Research Network does well more than just the post hemorrhagic hydrocephalus study line. There are ongoing studies to evaluate better ways to neuropsychologically evaluate children with hydrocephalus. There are ways to improve accuracy and longevity of shunt placement and accuracy of shunt placement and longevity of shunt function. There are studies to reduce the infection rate that is associated with shunt placement and shunt revision. There are studies to evaluate best treatment modalities for patients who are diagnosed with hydrocephalus at different points in their life, with different etiologies. It is an invigorating group of researchers to collaborate with. You have to keep up!

HA: What do you see as the challenges to your specific field of interest within hydrocephalus research?

WELLONS: Really, the challenges for hydrocephalus research are to continue to show the public and the NIH that this is a significant disease. The costs are estimated up to a billion dollars per year and approximately 300,000 children around the country are thought to be affected with it, at least. I don’t think it is going away any time soon. I think that there are things that can be done to reduce the problems associated with it, but we need the continued research support for our basic scientists to look for innovative and novel ways to reduce the incidents of hydrocephalus at a molecular level and potentially treat it at that molecular level. We need to fund our translational studies to get that from the lab to the bedside. We need a network such as HCRN and the adult HCRN to apply them, so that we can answer these questions, check that box and move on to the next question for this patient population.