Our ALS Community recently broke the 5,000-member mark, making it the largest of its kind in the world as well as the ideal platform for expedited research. And that’s just what we’re working on.
Since the community’s launch in 2006, we’ve conducted a number of research studies, both internally and in collaboration with leaders in the field. The goal is to turn up the answers that patients like you are seeking. For example, can lithium slow the progression of ALS? Or does limb dominance (aka “handedness”) correlate with ALS symptom onset? Check out the findings from our patient-led Lithium and ALS Study as well as our work with the University of Oxford on handedness.
We also like to think of the dynamic, up-to-the-minute reports on our site, such as our treatment reports and symptom reports, as another form of “research.” Every day, patients just like you contribute to these reports by sharing your real-world data, including what symptoms you’re experiencing, how you’re treating your condition and how well your treatments are working for you.
Now, the data you share is helping even more people. Through an exciting new partnership with ALS Untangled (ALSU), we are helping to take the data you share straight to the scientific literature – and at record speed. ALSU is an international consortium of clinicians and researchers seeking to investigate alternative and off-label therapies for ALS using the Internet, namely Twitter, Ning and PatientsLikeMe. Through these modern methods, they aim to provide “timely, accurate and scientifically valid analysis of alternative and off-label therapies.”
As they wrote in their mission statement, there are three phases to their cutting-edge approach:
- In the learning phase, they use their Twitter feed (@ALSUntangled) to collect ideas for potential therapies to investigate from patients just like you. (Got something you want investigated? Suggest it today!)
- Then, in the discussion phase, they import these targeted therapies into a closed Ning group and gather information on them from the consortium, including PatientsLikeMe.
- Finally, in the public release phase, they publish their findings as open-access articles in the prestigious journal Amyotrophic Lateral Sclerosis. That means patients like you, caregivers, clinicians and researchers all over the world can read these reports in entirety for free.
Our first collaboration with ALSU focused on the use of Low Dose Naltrexone (LDN) for ALS. The consortium analyzed data from the 31 members of PatientsLikeMe taking LDN to determine if there was evidence of benefit. What did they find? Efficacy data shared by these 31 ALS patients suggested that most did not notice any benefit, and side effects included headaches, nausea and diarrhea. On this basis, along with a review of the literature, ALSU concluded that it does not recommend LDN for ALS patients at this time. Read the full LDN study here.
Going forward, we hope that you will continue to share your evaluations of alternative and off-label treatments for ALS so that they can inform the world’s top researchers. We’re thrilled that your data is being taken seriously by the wider medical community, and we encourage you to participate fully in this novel research project.