Survey - Help Us Gather Outcome Data!!!
 
Thank you for your interest in our survey. At some point every person that deals with hydrocephalus asks the question, "What kind of outcome can I expect from all of this?". It is the most important question that a parent will ask, and it is important for medical professionals and everyone else involved. Unfortunately it is a question without an answer except that you will have to wait and see.

To some extent this question will always remain unanswerable, the brain is an amazing and unpredictable thing in so many ways. It will likely be a very long time before anyone can point to a fetal MRI and tell you the exact answer to that question. That doesn't mean, however, that we should not attempt to do better than we are now.

Currently there is simply not enough data out there to be able to really form a good picture of the long term outcomes. This survey is an attempt to fill that data gap so that parents and medical professionals can have access to a large number of cases to start building a better understanding of what the long term outcomes are for children born with hydrocephalus.

The cases that are compiled by this survey will be made available online as a searchable database so that parents, medical professionals or other interested parties can all have access to this information. Your participation will help to expand this database and each story helps to build the bigger picture.

The number of questions on the survey depends on the age of the person, however it should not take more than 20 minutes to complete. A few questions are asked about measurements taken during fetal and infant testing such as head circumference and ventricle size. If at all possible please obtain these measurements from your records. If you do not have these measurements, you may leave them blank and still complete the rest of the survey.

Privacy - At no time will any personally identifying information be shared with any other party. Certain items such as name and date of birth will be asked so that we can avoid duplicate entries, so that you can return in the future to update information, or so that you can finish the survey at a later time if you are interrupted. Those items will not be included in the searchable database or any copies of the data that are provided to others for research purposes. The exceptions to this will be the Duke Cord Blood Study participants who will have given Duke Hospitals permission to use their personally identifying information to link their information to their Duke medical records. If you do not indicate that you are part of this study, then your personally indentifying information will not even be shared with Duke, and if you are part of this study then Duke is the only party that will have access to your personally identifying information.

By following the "Begin the Survey" button below, you are agreeing to participate in the survey. Thank you!
 
Already Started a Survey? Click "Find My Survey" to load an existing survey to work on.
 


Legal Disclaimer: While every effort has been made to make certain that the information contained in this website is accurate, it must be remembered that the content is managed by a parent, not by a doctor. Information contained here is for general support purposes only and is no substitute for the care of a physician.