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The following are programs, registries, studies that collect data from ALS patients. They are easy to participate in, and should be a huge benefit to research into the cause, treatment, and cure. PALS should consider participating in one or more.
US National ALS Registry: https://wwwn.cdc.gov/als/ - You fill out a bunch of surveys. You can sign up to be notified of related research studies you can participate in.
ALS Focus: http://www.alsa.org/ALSFocus/ - A survey program that captures the experiences and perspectives of people with ALS and their caregivers.
- ALSA webinar: https://youtu.be/FR49kKJeFDQ
ALS TDI Precision Medicine Program: https://www.als.net/precision-medicine/ - Each month, you do the following:
- Wear activity monitors on wrists and ankles for six days, doing a canned set of exercises every other day of the six - takes about 15 minutes each time.
- Fill out an ALSFRS-R questionnaire - takes a few minutes.
- Record your voice over the phone, speaking a phrase several times - takes about a minute.
A nice feature is that you get to see the results of the first two, and track them over time. Here are examples:
See the child page, https://sites.google.com/view/alsinfo/patient-registries/als-tdi-pmp-progress-report , for a report of progress on this program.
ANSWER ALS: http://research.answerals.org/ - I participate through Johns Hopkins (where I got my second opinion)
Sites participating: http://research.answerals.org/clinics/
Google Sites
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