NOTE- If you have any questions or problems, feel free to call us at 888-295-4740 10am to 6pm, 7 days a week, NY time!
The Brain Tumor Virtual TrialTM is a new concept in collecting and analyzing outcomes data for brain tumor patients. We collect information from brain tumor patients - or their friends / family, over the internet. Participants are not told what treatments to do - we just record and analyze the outcomes of the treatments you and your doctors decide to try. The idea is to enable us to quickly identify which treatments or combinations of treatments look the most promising. We will then perform a traditional multi-center study on the best combinations of treatments.
Participants get access to ongoing results (no names are displayed - only ID numbers). Other interested parties can also request access to the results
All brain tumor patients are welcome to participate. There is no cost involved, but you must commit to:
- Update your records once a month. Should take 2 minutes or so. We send you a reminder when it is time.
- Send us a copy of each of your MRI reports (NOT THE FILMS - JUST THE REPORTS) and pathology reports. We use this to verify information that you supply to us. Whenever you have a brain scan, ask for a copy of the report, and send it to us. (This gives you a good excuse for asking for it!)
- Sign the consent form and mail it back to us!
- This requires a long term commitment. We hope to follow you for at least 2 years. If you don't think you can manage the monthly reports - do not sign up! Every person who quits or gets lost to follow-up cuts down on the validity of the study.
- The earlier in the course of your disease that you sign up, the more important your case is for the study - so sign up now, even if you don't have the required reports - they can be sent in later when you get them.
The record keeping that you have to do for this project also will help you keep track of everything that happens, and you can refer back to it when you need to. It sounds strange now, but 6 months from now, you may forget what treatments you had, or how you have been doing over the last year.
We will keep your information in the strictest confidence. We will NEVER use it to solicit donation, and it will not be sold or given to any other organization. When the information is analyzed, your identification is hidden - your name will not be used, only your patient ID number that we assign to your case.
Registration is only required the FIRST TIME you participate:
Updates can be posted as often as you want, but at least once a month. Also post an update every time you change medications or get an MRI report.
If you want to see how we collect information before you decide to participate, click HERE to log in on a test account. Using this test account, you can try to add an update and see how everything works, and view the reports to see all of the information you entered, but the data in this account does NOT get counted.. so if you like it and want to participate, REGISTER your own account, and keep it up to date.
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