At the 38th Congress of the European Committee for Treatment and Research in Multiple Sclerosis, PicnicHealth data was featured in two posters presented by our research partners. Continue reading below for more information on how your contribution is supporting leading Multiple Sclerosis researchers.
Research Partners: Roche / Genentech
This study aimed to describe the COVID-19 vaccination patterns and COVID-19 outcomes among patients with multiple sclerosis (pwMS) in the FlywheelMS cohort and within subgroups of pwMS defined by their most recent disease-modifying therapy (DMT) status.
Vaccination against SARS-CoV-2 is recommended for all pwMS to prevent severe COVID-19 infection and death, but there has been limited research into the COVID-19 outcomes in this population that maybe have impaired immune responses due to receiving immunosuppressive therapies to treat their MS.
This study used a new feature within the PicnicHealth Patient app to deliver in-app surveys to ask participants about their COVID-19 vaccination history and store their vaccination cards.
Looking at 1151 pwMS, 80% of patients were fully vaccinated or boosted, and among those fully vaccinated, 75% had received at least 1 booster or additional dose.
While this was a small study, the rate of vaccination in this population of pwMS was higher than that seen in the general US population and the rate of serious breakthrough infections was low.
Within this population of pwMS the rate of vaccination was higher among pwMS with known risk factors for severe COVID-19 outcomes, including older individuals, males, and those currently treated with immunosuppressive drugs.
Poster 1. Geiger C, Sheinson D, Boudreau D, Mace K, Hanson G, Belendiuk K, Bajaj P, COVID-19 vaccination patterns and outcomes among persons with multiple sclerosis in the FlywheelMS cohort, ECTRIMS 2022 - ePoster. Multiple Sclerosis journal 2022;28(3_suppl):692-945.
Research partners: Atara Biotherapeutics
PicnicHealth has developed a novel real-world data, medical records-based research cohort to study multiple sclerosis. This poster provides the initial study design, patient demographics and description of the healthcare resources utilization of patients with active and nonactive progressive multiple sclerosis (PMS).
Multiple sclerosis is commonly characterized broadly as either a primarily relapsing or progressive disease course. Despite differences in outcomes for patients with relapsing MS and PMS, there is only one diagnosis code used in real-world clinical care for MS, which does not distinguish between these two disease courses. This code also does not reflect patient’s disease activity (active vs. nonactive). As a result, there is limited real-world data available to better understand PMS.
Of the patients with PMS enrolled in this study, the majority of participants had nonactive PMS, meaning they were not experiencing relapses recently and did not have recent evidence of new activity on an MRI.
Examining approximately 5 years of available visit data, 45% of participants experienced at least 1 hospitalization and, for those hospitalizations, the median length of stay in the hospital was 4 days.
This is an ongoing, patient-centered study where robust real-world data can be used to generate meaningful future insights.
Poster 2. Watson C, Sadetsky N, Xun P, Thirumalai D, Colbert-Pollack S, Friedler H, Liebes G, Bogdanovich S, Kresa-Reahl K, Hanson G, Barlev A, A novel, patient-centred real-world evidence study designed to better understand active and non-active progressive multiple sclerosis using health records in the United States, ECTRIMS 2022 - ePoster. Multiple Sclerosis journal 2022;28(3_suppl):692-945.
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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
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Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.
