Chemotherapy-Induced Peripheral Neuropathy...
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October 2015
Dr. Noah Kolb, MD of the University of Utah (a consortium partner in the Foundation's for Peripheral Neuropathy Research Registry) presented results at the recent American Neurological Association 2015 Annual Meeting that indicated that as many as 50% of patients undergoing chemotherapy for cancer experience chemotherapy-induced peripheral neuropathy, but most cases go undiagnosed and are never reported.  To read more click here!
In July, the U.S. House of Representatives passed bill H.R.6, also known as the 21st Century Cures Act.  Having significant, bipartisan support, this legislation includes a number of provisions to help accelerate the development of new cures and treatments, supports scientists and provides a needed temporary boost of funding for the National Institutes of Health and the Food and Drug administration.  The act will boost funding to help young scientists begin their careers in research and aims to spur innovation.  The bill also hopes to incentivize the development of drugs for rare diseases, remove barriers that block sharing of health data for research and modernize clinical trials.   

The part of the 21st Century Cures Act receiving the most scrutiny is its provisions to create a more streamlined drug approval system by revolutionizing procedures for clinical trials. However the criticisms seemed to be debunked by a number of experts inside and outside government.  To view the article from The Chronicle click here or from Roll Call click here!

In previous correspondence, we described a unique opportunity for you to participate in an important research study.  This study, funded by PCORI and run by the University of Kansas, is designed to measure the relative effectiveness of currently approved pain medications.  The study has not gotten sufficient response and is now at risk of being defunded and cancelled!  This would be horrible news for them AND threatens future research initiatives because it seems as if patients are not interested in supporting research for PN.  But WE all know that's not the case at all.
New research sites are being added to the list!  
Click here for more information about the study and to find a research site near you!
Tampa Support Group leader, Dr. Cindy Tofthagen is the Principle Investigator for the following two research studies at the University of South Florida that are currently recruiting participants.  If you or someone you know is interested and might qualify, contact Cindy at (813) 396-9441 or by email at ctofthag@health.usf.eduClick here for more information!
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Disclaimer: The information contained in this e-news is not intended to substitute for informed medical advice. You should not use this information to diagnose or treat a health problem or disease without consulting a qualified health care provider. You are strongly encouraged to consult a neurologist with any questions or comments you may have regarding your condition. The best care can only be given by a qualified provider who knows you personally.
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