What Participants Share?
YOU are at the cornerstone of discovery. By sharing your protected health data you will be empowering crucial research that informs novel clinical trials on NF1 and glioma.
-
Answer an Eligibility Questionnaire
If you choose to join the NF1 Adult Glioma Registry, the first step is to answer a brief questionnaire to determine your eligibility. You’ll find out of your eligibility right away upon completing the questionnaire.
-
Review the Consent
Once your eligibility has been determined, you will be asked to sign consent. A brief informative video about the program, describing what your participation may entail will be made available to you prior to signing consent. Once you feel sufficiently informed, you will electronically sign the consent form. This can be done from any computer, tablet or smartphone.
-
Share Your Electronic Health Records (EHR)
In order to enroll into this program, you will be asked to consent to sharing your electronic health records (EHR). The amount of information you share with us it’s up to you, but you will be able to share your medical records including, laboratory and imaging test results.
-
Answer Short Health Surveys
You will be asked to answer two brief surveys about the state of your health, including symptoms related to both your brain tumor and NF1. These will help inform researchers on the experience of living with both these condition.
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.