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How Real Patient Experiences Can Make a Difference in the Fight Against Alzheimer’s

It’s an exciting time for Alzheimer’s disease research. The FDA approved the first new drug for Alzheimer’s in nearly 20 years in June 2021, and other potential treatments, targeting amyloid plaques in the brain, are making their way through clinical trials.1, 2 It’s a glimmer of hope for Alzheimer’s patients, who number over 6 million in the U.S. alone.3

Yet, it’s just the beginning. The novel therapies might not work for everyone, and a lot more work needs to be done. While randomized controlled trials remain a gold standard of advancing science, there’s another piece that’s essential to solving the Alzheimer’s research puzzle: real-world evidence.

Real-world evidence (RWE) takes data collected from the real world, outside of clinical trials, and uses it to assess patient outcomes. RWE for Alzheimer’s asks, What happens over a patient’s care journey? What works for different patients? Questions like these broaden our understanding of the day-to-day challenges of living with Alzheimer’s—and they’re key to paving the way to new advances and discoveries.

Today, reams of patient data are collected through electronic health records. It’s a potential gold mine of information for researchers, but RWE can only work its magic if patients share their data.

PicnicHealth offers a safe, secure, and easy way for real patients, in the real world, to share their medical records and be a part of the new wave of science. It takes just minutes to sign up, and when you do, your data is de-identified before it’s shared with researchers. You get something out of the bargain, too: access to your medical records, organized in a single timeline and accessible in one click.

Even better, RWE gives you the gratification of knowing that you’re contributing to vital research, almost effortlessly. It’s a chance to make your voice heard and move the needle on science. What if you were missing link to the next Alzheimer’s breakthrough?

  1. FDA Website. FDA’s Decision to Approve New Treatment for Alzheimer’s Disease. Accessed Nov. 17, 2021.
  2. More Alzheimer’s drugs head for FDA review: what scientists are watching. Nature. Nov. 15, 2021. Accessed Nov. 17, 2021.
  3. Alzheimer’s Association Website. 2021 Alzheimer’s Disease Facts and Figures. Accessed Nov. 17, 2021.

We hope you found this session informative! Sign up for PicnicHealth’s Alzheimer’s research program below.

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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)

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.

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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