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PicnicHealth Launches New Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRD) RWD Research Cohort

Alzheimer’s Disease is the most common form of dementia accounting for roughly 60-80% of all diagnoses.  The distinctive biological pathology is the accumulation of protein plaques of amyloid-beta outside of neurons and tangles of tau proteins inside of neurons.  There are 58 million Americans over the age of 65 currently and that number is expected to grow by over 50% by 2050.  Around 1 in 9 or 10.7% of seniors have Alzheimer’s dementia and, given the increase in seniors, will result in millions of additional diagnoses in the coming decades.1

Over the last few years, several new drugs, including anti-amyloid and anti-tau targeted therapies are reaching late stage clinical development, with aducanumab reaching a controversial approval.  With new treatment options comes new treatment strategies to allow physicians and patients to craft individualized treatment plans. Understanding the right target populations for the new, first in class, type therapies and how to sequence with the existing therapeutic tools is top of mind for manufacturers looking to access the market.  Using surrogate endpoints in trials and understanding how they relate to the highest bar: clinical efficacy, is a difficult challenge for a disease that can be in the works for decades before clinical presentation and has a heterogenous symptomatology.  

Despite new drugs, there are still unanswered questions. 

We are excited to announce the launch of our new Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRD) Research Cohort, a patient-centric real-world data source that provides comprehensive data to enable your therapy’s evidence goals.

For RWD/RWE, HEOR, clinical development, and medical affairs researchers looking to infuse their evidence generation strategies with patient-centric data, PicnicHealth’s AD/ADRD RWD Research Cohort is a leading source of complete, longitudinal health data. This dataset will enable researchers to better characterize subpopulations, track disease progression and long-term outcomes, and understand treatment use and effectiveness. 

The launch of this dataset furthers our mission to build fit-for-purpose real-world data by directly engaging and working with consenting patients and care partners. Acting on patients’ behalf, we are assembling complete medical histories, stitching together clinical observations from encounters with all providers, including disease diagnoses, lab results, and procedures occurring in outpatient and inpatient settings.

From the patients already enrolled, we have 6+ years of data  with a median age of 71 at onboarding, living in 46 states, the majority of which receive care from greater than 7 providers. 

We're enrolling a cohort of 2500 patients from all 50 states and representative by gender, race, and ethnicity.

Key to bridging the gaps left by many alternative data sources is leveraging our human driven curation of structured and unstructured data to create more complete patient journey that enable researchers to:

  • Understand the natural history from symptom onset to MCI and Alzheimer’s diagnosis
  • Track disease progression and long-term outcomes including changes in living situation and cognitive assessment scores
  • Construct treatment eras to understand when and why patients switch therapies

Starting with patients and care partners means building a trusted relationship for ongoing communication and participation.  Engaging directly with study participants with bi-annual prospective surveys fuel researchers with data that cannot be learned from medical records alone.

How is the PicnicHealth AD/ADRD Research Cohort different?

In recognizing the limitations of traditional RWD data sources like administrative claims and EHR aggregators that do not typically go beyond coded and structured data, the PicnicHealth AD/ADRD Research Cohort is able to provide a comprehensive data solution to help researchers with:

  • Retrospective and prospective medical record collection
  • Disease onset, signs and symptoms
  • Diagnoses dates for dementia, MCI, and/or Alzheimer’s Disease
  • Clinical findings (Imaging, CSF biomarkers, Cognitive assessment scores)
  • Treatment eras, switch reasons
  • Care partner reported outcomes (including ADCS-ADL, RUD-lite, and SPGI-S)

Real-world data will be important for telling the story of the evolving therapeutic landscape.  It truly is an exciting time for Alzheimer’s Disease drug development programs and for the patients and future patients who ultimately benefit from them.  We are committed to building the best data for your research needs by capturing this pivotal point in time with the most complete and deep data.

Contact us to learn more about the PicnicHealth platform and how we can support your research questions with the AD/ADRD Research Cohort.

1. Alzheimer’s Association. 2022 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2022;18.

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About PicnicHealth

Empower people to own their medical records. Advance medicine. We’re a passionate group of doctors, patients, data nerds, engineers, and builders, who believe in making something real that changes lives today and in the future.

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Create a List

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.

Having trouble managing your loved one's medical records?

Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.

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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)

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

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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

Register today!