Welcome to the
NF1 Adult Glioma Registry
Working together to answer the big questions in NF1 and Glioma.
How the registry works
Participants share data
Data is protected
Researchers study data
Data informs potential clinical trials
What Information is shared?
As a participant, you will share information about your health and your brain tumor. This will include some information from your electronic medical records. You will choose how much to share. Your data is protected using the latest technology in encryption.
Who Can Join?
Any individuals age 18 and older with NF1 and a histologically confirmed brain tumor, living anywhere in the United States, can join.
How to retrieve my data?
Every participant has the right to access their medical information as established under the Health Insurance Portability and Accountability Act. Depending on whether you already have access to your data or not, there are a few steps you might need to take prior to sharing your protected information with us.
Contact
(929)321-7385
We value your privacy. Please do not include any personal information (such as your address, social security number, or medical information) to keep it secure. Thank you very much.
Got questions? The Registry's Principal Investigator (Dr. Anna Piotrowski) is available to speak over the phone during her office hours (Mondays 12 - 5 PM EST)