Research

Behind the scenes at PatientsLikeMe! Take a peek at user research (aka usability testing)

Have you noticed changes on PatientsLikeMe in the past year? (We’re guessing you’ve spotted quite a few.) Did you know that we involve members in testing out various features or updates to the site before rolling them out? We do! Member Barbara’s user research session with Kris Engdahl, principal user researcher (left), and Nicole Barron, UX designer (right) On any given Thursday at PatientsLikeMe, there’s a good chance that Kris Engdahl is leading “user research” (aka “design research” or “usability testing”) sessions with members. Kris is our principal user researcher, and she works with PatiensLikeMe user experience (“UX”) designers and product managers to get member feedback on our website and product design. In 2017, more than 70 members participated in testing the PatientsLikeMe website, mobile apps and aspects of the member experience. Sessions usually take place over speakerphone, sometimes with screen-sharing so that Kris and a small group of PatientsLikeMe designers and/or product managers can watch a member “test drive” a particular web page or feature that’s in development. “When members volunteer to participate in a [usability] study, they are helping us find problems in a design before we unleash it on the world,” Kris says. “They perform a real …

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Lupus flares: Stats and infographics based on the PatientsLikeMe community’s experiences

Lupus flares are hard to define. In fact, there wasn’t a clear clinical definition of flares until 2010 (and even that definition is pretty broad). If you’re living with lupus, how would you define a flare? What do you experience during one? To gain a deeper understanding of flares from the patient perspective, the PatientsLikeMe research team partnered with Takeda Pharmaceuticals to study our online community’s discussions and data related to flares. Check out these graphics that show some of the key findings about flares among patients with systemic lupus erythematosus (SLE), the most common form of lupus. A mix of symptoms Below are the five symptoms researchers spotted most frequently in SLE forum posts about flares. Other flare symptoms mentioned in the forum include: nausea, fever/flu, lupus fog, hair loss, migraine, back pain, blood pressure, bloody nose, insomnia, mental health effects, panic, rib pain, skin sensitivity, swollen glands, weakness, weight gain, lower GI, face tumor, hives, infection, vasculitis, and voice effects. “I was really flaring…” PatientsLikeMe researchers say that a flare is “a cluster of symptoms which usually includes pain and fatigue, at a minimum.” But the specifics may vary: Everyone describes their flares — and their duration — differently. Here are just …

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Circadian rhythms and health: What’s the connection?

More than 3,600 PatientsLikeme members are living with insomnia, and 100+ report a circadian rhythm disorder. In October, three researchers won the Nobel Prize for their work examining the relationship between sleep, circadian rhythms and health. So with Daylight Saving Time just behind us, we’re bringing you more info about the “body clock” and how it can affect health. Let’s back up — what ARE circadian rhythms? Circadian rhythms are physical, mental, or behavioral changes that follow a daily cycle. They’re regulated by biological clocks, which exist in most tissues and organs in the cells. A master clock coordinates all of the biological clocks and contributes to our sleep patterns (it also affects eating habits, body temperature, and other functions). These internal “body clocks” are affected by environmental cues, like sunlight and temperature. New research making headlines The 2017 Nobel Prize in Medicine was awarded to three Americans for their work on circadian rhythms. The Nobel committee said their research was pivotal, because “the misalignment between a person’s lifestyle and the rhythm dictated by an inner timekeeper — jet lag after a trans-Atlantic flight, for example — could affect well-being and over time could contribute to the risks for various diseases.” What’s the relationship between sleep and …

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Marijuana and MS: Get the scoop

From legality to availability, recreational use and potential use as treatment, marijuana is a hot topic. In the MS forum, members are talking about marijuana and its potential to relieve symptoms of MS like pain, tremor and spasticity. We wanted to know more, so we asked our Health Data Integrity team to take a look at this topic. So, what is marijuana and how can it impact health and MS? Take a look. First, a quick refresher: What is Marijuana? Marijuana is a mixture of dried flowers from the Cannabis sativa or Cannabis indica plants. The marijuana plant contains over 85 cannabinoids that are found in the leaves and buds of the female plant. Cannabinoids are classified as: Phytocannabinoids: found in leaves, flowers, stems, and seeds of the plant. Endogenous: made by the human body. Purified: naturally occurring and purified from plant sources. Synthetic: synthesized in a lab. Cannabinoids create different effects depending on which receptors they bind to. These chemical compounds are responsible for marijuana’s effects on the body with the most common being delta-9-tetrahydrocannabinol (THC) and cannabidiol (CBD). Different strains with different combinations and levels of the various cannabinoids along with different methods of consumption give users varied effects. How does marijuana impact MS? …

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Sleeping with a health condition

The elusive “good night’s sleep.” Does it exist? Or is a bad night’s sleep the norm? Catching enough Zzzs can be complicated, especially when you’re living with a chronic illness. So, how can lack of sleep impact your health? Take a look at the results from a study we did with 5,200+ members of the PatientsLikeMe community: How are you sleeping? Does your sleep affect your health? Or vice versa? Add your voice to the forum. Want to know more about sleep? Stay tuned for the 4-1-1 on circadian rhythm. Share this post on Twitter and help spread the word.

From preclinical to approval: How clinical trials bring new treatments to market

Often we hear of new treatments becoming available, but have you ever wondered what each new treatment had to go through to get approved by a regulatory body like the FDA? Before a new treatment is approved for commercialization, it needs to go through a meticulous trial process to prove a number of things: Is the drug safe? What are the potential side effects? Does the drug do what it’s supposed to do? All of these questions and more need to be answered before a drug can be considered for approval by the FDA, so that’s where clinical trials come in. Here’s a breakdown of what’s involved in the drug development process, from preclinical through to commercialization and post-approval monitoring. (Click to enlarge) How can I participate in a clinical trial or find out more? You can learn more about research and clinical trials by joining or logging into PatientsLikeMe and clicking on the Research tab Use the PatientsLikeMe Clinical Trial Finder to search for trials that could be a good fit for you Check in with local associations and hospitals to see if they are recruiting for any trials Talk to your healthcare provider/clinician to see if there are opportunities …

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Want to know more about Radicava (edaravone)? Here’s a snapshot:

With the recent FDA approval of Radicava (edaravone), we wanted to know more about how it works and what it means for patients living with ALS. We asked Maria Lowe, Pharm.D., BCPS, and our Health Data Integrity team, to give us a snapshot of the drug, how it’s used and what you should know. Maria’s rundown is meant to give you more context so you can have better conversations with your care team – as always, talk with your physician before starting any type of new treatment. Radicava: The quick hits Radicava works as a free radical scavenger. When free radical (toxic by-products of cells that are highly unstable and reactive) levels are too high, cells are damaged resulting in oxidative stress (which may damage motor neurons). The way in which Radicava works to help patients with ALS is not fully understood yet; however, researchers believe that by getting rid of these free radicals it can help prevent some cell damage. In clinical trials, treatment with Radicava was found to slow the decline in functional disability as measured by ALSFRS-r scores for some patients. However, it is important to note that Radicava does not stop the death of motor neurons (it’s …

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It’s Clinical Trials Day, and patients are driving change

Today is Clinical Trials Day – celebrated to bring more attention to public health and also to recognize the contribution of the patients and healthcare professionals who make clinical research possible. At PatientsLikeMe, it’s members who are changing the way clinical trials are designed. Bringing the patient voice to clinical trials has long been part of the PatientsLikeMe mission. Jeremy Gilbert, Vice President, PLM Health and Paul Wicks, Ph.D., Vice President, Innovation, sat down with us last year to talk about the importance of putting patients at the center of drug discovery and development. Check out their Q&A here. Recently, Paul Wicks touched on the purpose behind the latest PatientsLikeMe study on clinical trial design involving the patient perspective, and why organizations need to work on improving their trial process: “As researchers we know that clinical trials are the best tool we have for identifying new, safe, effective treatments. Patients know this, too, and they’re motivated to take part. But what this research tells us is that actually participating in a trial is not a fun experience; about as much fun as dealing with the worst airlines, banks, or utility companies, and we all know how that can be. This …

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Paul Wicks on the power of sharing data

Back in December, our VP of innovation, Paul Wicks, Ph.D., spoke at the annual International Symposium on ALS/MND in Dublin. The goal of the annual meeting is to share new understandings of ALS/MND as quickly as possible through collaboration between leading researchers around the world. Now, we’re sharing a video of his presentation about what you and the ALS community has shared about living with ALS over the last 10 years. Here’s what Paul had to say: “We hope this presentation shows the power of patients sharing their data to help shed light on ALS. It’s a disease that can isolate people, rob them of their voice, and sap their strength to fight back, so we’re proud that we’ve been putting the data our members share to good use for over a decade now and we’re keen to share some highlights of what we’ve found.” What do you think about Paul’s presentation? Share your thoughts in the forum. Share this post on Twitter and help spread the word.

The record on research: Catching up with TOA member Cris

Back in January we introduced Cris, a member of the 2016-2017 PatientsLikeMe Team of Advisors living with ALS. She’s also a fierce patient advocate who’s participated in several clinical trials since her diagnosis. We recently caught up with her to learn about her experience with clinical trials and why access and awareness of clinical trials is so important. Despite her shy personality, Cris got involved with patient advocacy with the encouragement of her ALS specialist, Dr. Richard Bedlack. Determined to overcome her shyness, Cris found motivation and purpose in advocating for future patients, family and friends and the belief that access to all trials should be easily available for a patient and not complicated to locate. In May, she attended the ALS Advocacy Day in Washington D.C., where she represented pALS from North Carolina and shared her own ALS journey with her state’s senators. Cris believes that clinical trials are critical for survival, present and future, but physicians don’t know about, or take the time to discuss current trials with patients unless their facility is active in research. There are very few active ALS clinical trials and because of stringent trial protocols, many patients are not accepted due to progression …

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