During multiple sclerosis (MS) awareness month, Healthline hosted a Twitter chat (#MSTrialChat) to discuss clinical trials for MS research, as well as patient involvement and advocacy for clinical trials.
Healthline partnered with the following for the March 26th event:
- Antidote, a health company helping to bridge the gap between patients and clinical trials and other breakthrough research (@antidote_me)
- MSWorld, the largest patient-run organization supporting those living with MS (@MSWorld_Inc)
- MS-certified RN and patient Cherie C. Binns from iConquerMS, an initiative-based organization that helps those with MS be a part of the research discussion by sharing their health data (@iConquerMS)
- Stuart Schlossman, who lives with MS and is the founder and president of MS Views and News, a not-for-profit organization educating the MS community (@MSViews_andNews)
Check out the Q&A below!
Antidote: We’ve seen the approval of the first oral therapy for relapsing MS and the first disease-modifying therapy for primary progressive MS. We better understand the role [of] exercise and rehab in MS. And, we’ve recently seen potential benefits from stem cell therapy.
Cherie C. Binns: 10 years ago, we had 5 drugs available to treat MS. Today, there are 14, with an additional off-label handful of medications, and more nearly ready for FDA submission.
MS Views and News: I would say that many thousands of MS patients have benefited, whether directly related to the trial or the eventual FDA approval of the medication.
iConquerMS: Symptom management has become a priority and we are better at that.
Antidote: Patients should feel empowered to take part in clinical trials. After all, they are the key stakeholder: All research is done to find better cures and treatments for patients with MS.
MS Views and News: When I [Stuart Schlossman] was diagnosed, there were just 3 medications on the market and hardly anything for the symptoms. Great to have been able to receive disease-modifying treatments, but we needed help with the symptoms meds. Now, just about every symptom has a treatment.
iConquerMS: iConquerMS addresses this by surveys sent to members every 6 months and asks, as part of that, what information is missing from our current knowledge.
Antidote: There’s also an access problem. It’s really difficult to find a trial today. That’s why we’re working with orgs like @MSWorld_Inc, @MSassociation, and @MSViews_andNews to share our clinical trial search tool where patients are looking for information.
MSWorld: Doctors and any online access to those living with MS.
iConquerMS: The voices of People with MS (PwMS) are being listened to as to what is important to research next.
MS Views and News: Yes, the #PwMS community are much interested in knowing about certain medications, especially wanting to know more for #SPMS and #PPMS.
Antidote: We actually just published a blog on this on Friday. Check out our post for some more details!
MSWorld: Side [effects] and how this drug will affect us is the biggest barrier.
Cherie C. Binns: I don’t think the average person realizes how many safety measures for the participant in a trial are built in.
MS Views and News: Other reasons for lack of participation: fear/transportation/location/income/will I just get a placebo or the real thing?
Antidote: For logistical issues, it’s important that researchers talk to patients as they design their trials. Will the treatments being studied improve quality of life? Are the procedures acceptable? Is this trial asking too much of MS patients?
MSWorld: When people are in trial, they need to be aware of the side effects.
Cherie C. Binns: I have participated in focus groups with research teams as a patient and it is amazing how open they are to our needs and suggestions.
Antidote: Involve patients in trial design! We took a small survey of engaged patients (n=145) and 88% said they would be willing to [meet] with a pharma company to provide a patient perspective during trial design. More on that here.
MS Views and News: Ask the patients in mock surveys [directly] and through the [patient advocacy organizations] — with direct email and via [social media] — questions that patients have, their concerns, as well as what they want in or for clinical trials.
Antidote: If we may, we’d like to recommend that you check out our search tool, either on our website or on our partner websites. We’re making it easier than ever to find a trial match — you’ll just need to answer a few questions about your health.
iConquerMS: Most MS Clinics and Centers have trial information posted and have staff who are recruiting and taking part in the actual research.
Antidote: We’d refer you to the websites of some of our partners to learn more about clinical trials. @CISCRP [The Center for Information and Study on Clinical Research Participation] also offers some excellent resources on this topic.
MSWorld: On many online sites, there are sections for upcoming trials. Between this and doctors, we should be able to find trials.
MS Views and News: Create patient-steering committee meetings to learn more of what you want them to help you to expose.
Antidote: Just last week, we were thrilled to see that stem cell transplants seemed to stave off relapses in a recent trial. We’re excited to see where this research goes and we’ll be watching closely.
iConquerMS: Development of a vaccine that can prevent those at risk of developing MS from getting it.
MS Views and News: For me and others I know, we want to know how we are going to be able to fix what has been broken… How to correct what the lesions have helped to destroy. Fix me, make me walk better, allow me to feel with my hands, get the tingling and buzzing to stop.
MS Views and News: The importance of what a clinical trial means and that for most to know that for every medication on the market, this could not have occurred without the clinical trial for that medication.
Antidote: We wish that people understood how easy it can be to find a trial match if they’re interested.
Antidote: This is one of our most common questions, so we’ve pulled together the process in a blog here.
MS World: You will have constant care through doctor’s office. They will be able to help with side effects, if you are experiencing any.
Antidote: Joining a clinical trial is a big decision, so patients should make sure they have enough information to feel comfortable about enrolling.
MS Views and News: How about working with #MSViewsandNews to provide educational programs solely designed “about clinical trials.” We and other PAOs have the ability to do this IF we have the funding to make it happen — just saying.
Thanks to everyone who participated! To find out about upcoming events on Twitter, follow us @Healthline!