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2022 Multiple Sclerosis Research Update

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.

Multiple Sclerosis and COVID-19

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. 

Why is it important?

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.

Ongoing Observational Multiple Sclerosis Study

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).

Why is this important?

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.

Ensure You Have the Appropriate Legal Status

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.

Gather and Organize the Medical Records in One Place

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.

Review the Medical Records to be an Informed Advocate

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

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Together, we can make a difference.

Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

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1

Build a support network.

If your loved one is in the early stages of Alzheimer’s, putting a support system together might not seem like priority #1. But it’s never too soon to build a network of people that you can turn to in times of need. Cultivate connections today with the people who can be there tomorrow, or whenever you might need a hand.

You may also want to connect with other Alzheimer’s caregivers through a support group, whether it meets 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 the world of Alzheimer’s.

2

Stay organized.

If your loved one is in the early stages of Alzheimer’s, putting a support system together might not seem like priority #1. But it’s never too soon to build a network of people that you can turn to in times of need. Cultivate connections today with the people who can be there tomorrow, or whenever you might need a hand.

You may also want to connect with other Alzheimer’s caregivers through a support group, whether it meets 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 the world of Alzheimer’s.

3

Plan for the future.

It isn’t always easy to look into the future with Alzheimer’s—but doing the legwork now will save you from stress later. If your loved one is in the early stages of illness, you can involve them in conversations about legal, financial, and long-term care planning decisions. Despite the difficulty of these topics, you’ll all feel empowered by facing them early, and you can move ahead with greater confidence.

4

Explore treatments and clinical trials.

It’s an exciting time for Alzheimer’s research, with new treatments in development and coming to market. Ask your loved one’s doctors about therapies they can try or clinical trials they can join. One easy way to participate in research is to sign up at PicnicHealth, which helps to advance Alzheimer’s science by sharing participants’ anonymous health data with some of the brightest minds in research.

5

Make time for self-care

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 with Alzheimer’s. And don’t forget to keep a sense of humor along the way.

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25,966

patients onboarded to platform

1,427,368

medical visits processed

56,861

facilities provided medical records

255,101

healthcare providers

95+

research programs

12

published posters and manuscripts

10

partnerships withtop 30 pharma

New Research

Discover how PicnicHealth data powered medical research in 2021

Keeping Patients at the Center

This year, experts from PicnicHealth joined podcasts, webisodes, virtual summits and much more to speak to the importance of patient-centric approaches when building complete, deep real-world datasets.

LC-FAOD Odyssey: A Preliminary Analysis, presented at INFORM 2021

Data from real-world medical records:

(from 13 patients with LC-FAOD)

16 yrs old

Median age at enrollment

38% Female

15 providers / patient

7.5 years of data / patient

Data from patient-reported outcome (PRO) survey

(from 13 patients with LC-FAOD)

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31,903

patients onboarded across 19 conditions

2,719,618

medical visits processed

255,101

healthcare providers

86,256

Facilities provided medical records

70+

Change Champions onboarded

95+

Research programs

15+

published posters and manuscripts

14

partnerships with top 30 pharma

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