Glioblastoma Multiforme is the most common and most aggressive type of primary brain tumor.
|Nausea and vomiting||Nausea and vomiting|
|Progressive memory, personality, or neurological deficit||Progressive memory, personality, or neurological deficit|
There was a very interesting an relevant article on CNN this evening that I wanted to post to the community: "Experimental vaccine gives father of the bride precious time":http://www.cnn.com/2010/HEALTH/09/10/experimental.vaccine.delays.cancer/index.html?hpt=C1
My mother has a glioblastoma multiformae, diagnosed May 5th 08. She had surgery, then temodar+radiation for 6 weeks. I've heard that there are some people who are taking Avastin and Temodar together as a followup treatment? Is this a practice? Is Medicare B paying for it in any cases? Or is all this just trials? Thanks, Ben
|North American Brain Tumor Coalition (NABTC)||
The North American Brain Tumor Coalition is a network of non-profit organizations in the United States and Canada that advocates for increased research into treatments, causes, and rehabilitation procedures related to brain tumors.
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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Created by biotechguy | Last updated 11 Sep 2010, 01:34 AM
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