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Research participants
I think it is important to do what we can to help advance ALS research. That can take place in many ways including raising funds, volunteering, and even participating in research studies, I know we have a few pALS and other forum members who are participating (or considering) participating in clinical trials and research. Could you share some information about how you became involved with research? What is the study focusing on? What university or hospital is the studying taking place at? What kind of tests or information are they collecting and tracking? Is it an ongoing study?
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3 Replies
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One major challenge I face regarding participation in clinical trials is that I fall outside of the enrollment criteria – – they usually want subjects within the first 3 years of their diagnosis – – at 9 years, I’m excluded – – Even though I’m still functioning very well.
But there are opportunities out there like the Precision Medicine Program from ALS Therapy Institute. I’ve been participating for 3 years now. This involves data collection (in my own home!) Every few weeks I log into their website and update my online ALSFRS-R, update a lifestyle questionnaire and do a voice recording. The auto-dialer calls me and I read 4 pre-set phrases into the phone. For one year I wore actigraphs on my wrists and ankles monthly so they could track my daily activity. This year, they are planning to send a phlebotomist to my home to collect blood samples; they will do my genome sequencing and share the results with me.
I’d recommend this program to others – – and wrote a column on it here: https://alsnewstoday.com/2018/03/13/als-data-research-week-living-numbers/
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Since my ALS diagnosis on March 15, 2019, I have participated in one study. The request to participate in the study came from my neurologist at the Cleveland Clinic on July 10, 2019. The study, Environmental Risk Factors for ALS, is being conducted by the Dartmouth Hitchcock Medical Center:
“The research study from Dartmouth College will investigate the most susceptible time periods during which environmental exposures carry the greatest risk for later development of ALS, by using residential history to estimate exposures to waterbody cyanobacteria, pesticides, and polluted sites in ALS patients compared to healthy controls in time-linked databases. The research team will also develop a pooled genotype dataset derived from genetic variants implicated in neurodegenerative illness on ATSDR National ALS Biorepository and Dartmouth College northern New England control and ALS specimens to evaluate gene x environment interactions in ALS risk. The study outcomes will reveal genetic variants that raise ALS susceptibility, and determine the periods of life that carry the greatest risk for developing ALS from exposures to environmental stressors.”
While at the CC on July 10, I was given full instructions for participation in the study and a large envelope containing a multi page data form and collection items for toenail samples and a saliva sample. The nurse took several vials of my blood. The data form asked for the address and zip code of every location I had lived in since my birth and the water source for each location. There were additional environmental questions relating to exposure to pesticides, rivers or other bodies of water, and various kinds of contaminants. This is an ongoing study, but I am not just sure of its termination date.
On Sunday, September 29, I watched Dr. Bedlack’s 9/25/19 webinar (thanks to Dagmar!) and became interested in the possibility of participating in two of the studies he will be conducting in the near future: a study of Theracurmin and a study of Clenbuterol. Dr. Bedlack indicated in the final moments of the webinar that interested pALS could email him and he would forward their emails to his research assistant. I sent Dr. Bedlack an email Sunday evening and received a response from him on Monday morning at 9am, saying he appreciated my interest and would forward my email to his assistant. An hour later, I received an email from Lisa, his assistant, with further information letting me know that once a start date had been established, they would be getting back to pALS who had expressed interest in the studies.
Although I don’t know if I will be accepted as a participant in either of these studies, I am glad that I have finally taken a step towards participation, and I feel encouraged to look for other studies, particularly, drug trials for which I might be eligible and which might be feasible for me.
Thank you for posting this topic, and I am very interested to hear what other Forum members have to say!
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Diana,
Once again you have inspired me! Thank you for seeking out opportunities to help understand and find a cure for ALS. I know you have a lot on your shoulders and your participation is so valuable. Please keep us posted as you learn more about these two studies. Thank you for everything you do!
Amanda
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