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Clinical Trials and Research updates
There are a couple of websites that list ALS clinical trials and research opportunities that need pALS and fALS to participate. I was looking at https://www.als.net/als-research/als-clinical-trials/ this morning and they updated some information yesterday.
Have you heard of any trials or research studies starting to open back up?
Research and clinical trials are essential to finding a cure or a way to stop the progression of ALS. If you are willing to participate in research, where do you find opportunities? Do you look up trials on your own or do you rely on recommendations from your medical care team. Do you think that participating in ALS research is important part of your journey or do you have concerns that it may have a negative impact? Does your medical team encourage you to particpate in research?
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2 Replies
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This is the study that I participate in https://clinicaltrials.gov/ct2/show/NCT00317616
This study is for pre fALS – for people with a family history of ALS. They are focusing on identifying biomarkers for ALS and a treatment and cure for ALS. Many of the articles that I have read on ALS News Today are about some of the findings from this study in collaboration with other studies. The contact information is listed on the page.
clinicaltrials.gov provides a list of clinical trials and ongoing studies.
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Since my husband was diagnosed in January 2019, I’ve been trying to stay up on what’s going on with clinical trials. He was not initially interested in participating, primarily because of the placebo requirement. Last Fall I started watching the progression of the Healey Institute’s platform trial project. As it developed and was approved to move forward with the first three (and soon 2 more) therapies, we were more convinced that this was something he was interested in being part of. They still have a placebo component to it but the trials last 24 weeks, so you don’t have to wait so long to find out. I won’t lie, the fact that his ALS is progressing gave support to participation. We live in WA state and he’s going up to the U.W. to be screened for possible participation next month. I’d be interested in finding out if others are or will be participating in the platform trials.
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