The survey is now closed

Thank you to all that have participated. We will post data as it becomes available. The doctors are starting to work on their analysis and we will hopefully be ready to get published before the summer. Stay tuned!


Survey FAQ

Who is involved with the survey?

Alan Kaplan, founder of and Dr. Mark Burish, Associate Professor, Department of Neurosurgery, UT Health Houston and Director of the Will Erwin Headache Research Center as lead researcher. We also have these prominent Headache specialists contributing to the survey: Dr. Randy Evans, Dr. Amy Gelfand, Dr. Matthew Robbins and Dr. Christina Szperka.

What is the purpose of this survey?

This is the first survey for NDPH patients. The purpose is to collect information about patient experiences from onset to diagnosis to treatment of their NDPH disease. The data will then be published with the hope of educating headache specialists and researchers about this community and inspire research into causes and treatments.

Who is eligible to take the survey?

Anyone who has been diagnosed with NDPH can take the survey. Patients 17 and under need to get permission from their parents – both their parents and they need to sign a consent online. We encourage caregivers to help them complete the survey. The survey is also open to international patients, in English only.

Are my responses anonymous?

Yes, this survey is anonymous. If you would like, you can opt-in with your email address to receive updates on the survey and the analysis, but this is optional.

How long will the survey take to complete?

The survey takes approximately 45-60 minutes to complete.

If I'm not feeling well, can I stop and go back and finish later?

Yes, you can save it by scrolling to the bottom and clicking “Save & Return Later.”

How long will the survey be available to take?

We plan to have the survey open for 90 days. We may extend longer if more time is needed to generate more survey responses.

How can I donate to to help with the survey and the important next steps once the survey analysis is complete?