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Wednesday, April 05, 2023 10:31:56 PM
Re: JerryCampbell post# 583145
Wednesday, April 05, 2023 6:52:32 PM
Post#
583245
of 583280
The Fourth Biennial World Summit of Brain Tumour Patient Advocates at the National Institutes of Health (NIH) in Bethesda, Maryland, October 9 to 12, 2019.
Plenary session 10 at the IBTA World Summit
Access to Therapies (compassionate use, off-label use, regulatory approval and HTA)
Panellists: Dr. Mark Gilbert, Linda Powers, Irina Odnoletkova, Suzanne Demko (FDA), David Jenkinsson.
Outside of their current trial for a dendritic cell immunotherapy, Northwest Biotherapeutics has treated over 170 glioblastoma patients, and non-glioblastoma patients, under compassionate use. Linda believes that patients need more say in decision making and more access to new treatments through compassionate use. Linda explained that Northwest Biotherapeutics collects all the data from their compassionate use patients. Patients groups can help enormously by increasing contributions of compassionate use data to data registries.
https://issuu.com/ibta-org/docs/ibta_magazine_2020
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