Watching the Watchers: Facebook Group Tracks ALS Clinical Trials
Amyotrophic lateral sclerosis (ALS) leaves patients unable to walk, talk, or eat, and a diagnosis often triggers a craving for knowledge. One such diagnosis led to the creation of a Facebook group.
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disorder affecting the nerve cells in the brain and spinal cord that results in loss of muscle control. Early symptoms can consist of muscle twitching and slurred speech. As the disease progresses, patients usually report an inability to walk, talk, eat, and eventually breathe. While 5–
10% of ALS cases are inherited, the cause is often unknown for most diagnosed patients. Although currently four FDA-approved drugs in the United States slow the progression of symptoms, this fatal disease has no cure. Also known as Lou Gehrig’s disease, ALS affects roughly 1 in 20,000 Americans.
Over 100 digital health communities on Facebook offer support for ALS patients, whether it be emotional support, caregiver advice, or a space to vent. Other groups donate ALS equipment, push for FDA approval on new therapies, or offer advice for traveling with the disease.
Dr. Nadia Sethi launched ALS Clinical Trials and Research in October 2019, weeks after her husband was diagnosed with ALS. Sethi, a dentist, described in a phone interview how she saw a “void” in the Facebook communities, particularly a lack of evidence-based scientific information within the ALS community. Sethi’s group focuses on disseminating accurate, scientific information about experimental treatments and clinical trials. Today the group has over 2,300 members, with over 100 posts per month.
Sethi only posts information from credible, peer-reviewed sources. But members can also post. “I allow really anyone into the group with a connection to ALS, and I let people post most things that they wish,” Sethi said. Sethi’s goal is not to “silence people,” but rather to encourage discussion and flow of information. The only administrative action she takes is correcting posts that contain poor or misleading information from unreliable sources. Sethi does not allow requests for advice regarding the best treatment. “This information should come from each group member’s personal physician,” she said.
To keep group members informed, Sethi launched ALS Signal, a database maintained entirely by ALS patients and caregivers that describes current, ongoing interventional trials all around the world. Sethi created ALS Signal because she noticed that some neurologists are not aware of all the ALS clinical trials. Many neurologists only have access to local trials. Unlike clinicaltrials.gov (which only covers trials in the United States), ALS Signal includes potentially lifesaving trials in countries like Italy, Japan, and Korea.
Sethi knows from experience that when someone is diagnosed with ALS, the first thing the person wants to know is “what’s out there.” Currently containing information about more than 90 trials, ALS Signal lets ALS patients and caregivers easily access a comprehensive, up-to-date list of trials with the name of the drug and treatment, recruitment status, and trial phase and duration. Sethi said that even with a resource like ALS Signal, the challenge is “getting the word out.” To that end, her Facebook group has been influential. “This [Facebook group] has been an incredible platform to share the word to countless people who may benefit greatly from this resource,” Sethi explained.
The ALS Clinical Trials and Research group has focused on helping members encourage their congressional representatives to join the ALS Congressional Caucus, a bipartisan group with the goal of leading the federal fight to end ALS. Sethi emphasized the importance of the ALS Caucus in representing the “voice of ALS patients in Congress,” whose federal influence is imperative for raising awareness of the disease and supporting efforts to continually develop new and improved ALS treatments. She added that her work was not yet complete, mentioning the need for “representation from more remote communities” in the country. Sethi hopes that eventually this movement will span across the US to allow for the voices of all ALS families and caregivers to be heard.
On several occasions, physicians or researchers have posted in the ALS Clinical Trials and Research group about new research or interventional trials and engaged in Q&A sessions. Sethi mentioned how valuable it is to connect directly with the researchers, since certain information (like current enrollment status) is often missing from trial registries. Sethi has also received input from researchers and pharmaceutical companies for ALS Signal, which helps ensure that the information posted is accurate and up-to-date. Sethi’s work has received attention from premier neurologists as well, which has helped spread the word about the broader ALS community to the general public.
The greatest advantage of being a part of this group’s online community has been the opportunity to meet “the most incredible people unified by this terrible disease,” said Sethi. She finds it particularly gratifying when she hears from people who find information about clinical trials from her group and when they tell her that they “found hope.”
“It’s empowering to obtain and disclose this information to those who can truly benefit from it,” said Sethi. With a terminal disease like ALS, Sethi stated that even making the “smallest difference” in patients’ lives through the disclosure of a new experimental treatment can be monumental. Sethi said that her role is emotionally tolling, since the FDA has failed to approve promising clinical trials and hasn’t always agreed with the entire ALS community about certain treatments or trials; however, Sethi is motivated to push forward with the support from her group members as well the knowledge that her work could potentially change someone’s life. To this day, Sethi posts about new research or updates on current clinical trials to make “even the smallest difference” in the lives of ALS patients around the world.
