A Glimpse Inside Our March 2011 Meeting

By John Kestle, Thursday, April 21st, 2011

The HCRN recently held another highly successful semi-annual network meeting, returning to Birmingham, Alabama, where the local site treated members to their great southern hospitality.  As the network has continued to grow in size and studies the time desired by the team to meet and discuss the current and proposed research and network infrastructure has also expanded.  To make the most of the two days the HCRN meeting started the same afternoon that its members flew in from across the US and Toronto, Canada and seemed to go non-stop until members were saying goodbye at airport terminals.

That first afternoon was spent discussing several ideas for the first HCRN Randomized Controlled Trial. During the following days time was spent providing updates on ongoing studies such as The Registry and Infection Protocol which included discussions about possible differences at the sites in practice and making coding decisions.  Jay Riva-Cambrin, one of the lead investigators for The Registry even gave an etiology coding quiz which site investigators and coordinators worked together to complete.  These discussions showed that the HCRN continues to be dedicated to the highest quality and has not grown in the least bit complacent about studies that have been active since 2007 and 2008.  To this end, the recent implementation of site monitoring in the network was also presented and discussed and reports are showing the visited sites to be well organized and the data entered to be highly accurate.  The network has been very receptive to these visits and to implementing the few suggestions for improvement when they do occur.

Also discussed at the meeting were details around enrolling patients in the recently launched SOPHH study which is working to determine and standardize the best care for neonates with intraventricular hemorrhage and working through logistical issues in preparing to launch the next study (VINOH), which will look at neuropsychological outcomes in pediatric hydrocephalus patients.  Results were provided for the Ultrasound Study which is now nearly complete and updates were provided on study proposals that were presented at the previous meeting.

The coordinators learned about the new software that the Data Coordinating Center will start using soon and discussed data collection to make sure everyone is up to date and consistent across the network.  It was another energetic meeting for the HCRN and much was shared and accomplished.  Thank you team Alabama for coordinating a successful event!

2 Responses to “A Glimpse Inside Our March 2011 Meeting”

  1. jane andren says:

    Coding is important. Did you discuss one related to “hydrocephalus related headpain” so that Docs quit calling them migraines and treating them as such. This is also important for SSD.

    Also, lots of research is being done for neonates and children. Alot of research has been done on NPH. I agree that this needs to be done.

    But what about our young and middle aged diagnosed patients? Is there no one out there interested in this huge population?

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