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Posted by on Nov 12, 2013 in Foundation NewsLine |

Experimental Therapies – Resources on Clinical Trials

Dear NNPDF Families and Friends,

As many families within the NNPDF membership are currently involved in clinical trials for both disease types: (ie:  Niemann-Pick Disease Type C = NIH/TRND NPC Cyclodextrin & Niemann-Pick Disease Type B = Acid Sphingomyelinase Deficiency (ASMD) Enzyme Replacement Therapy at Mt. Sinai) and both trials are continuing to recruit/search out more participants for both, the NNPDF Central Office has updated the “Thinking About Experimental Therapies” page on the NNPDF web site to include two new links:
• “NIH Clinical Research Trials and You” – The National Institutes of Health, which is holding the Cyclodextrin trial, recently developed and rolled out a new web resource site for those considering participation in a clinical trial.
• “Learn About Clinical Studies” – This covers basic questions about clinical trials.  What is a clinical trial?  How long do they last? It also covers questions pertaining to participation as well.
• “Thinking About Experimental Therapies” – This is a document developed by the NNPDF as a resource for those considering participation in a trial………it provides a litany of questions that you should ask/understand prior to taking part in a clinical trial.
Visit the NNPDF “Experimental Therapies” Web page for access to these new links as well as other resources.