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PicnicHealth Launches New Lupus Nephritis RWD Research Cohort

PicnicHealth’s Lupus Nephritis Real-World Data Research Cohort arms researchers with powerful data to support clinical research programs and drive evidence generation now and into the future.

Did you know that 40% of patients with Systemic Lupus Erythematosus will develop Lupus Nephritis (LN) within the first 5 years of diagnosis with about 10% progressing to End Stage Renal Disease?1

How We Build a RWD Cohort:

  • Work with consenting patients to capture the breadth and depth of medical data that exists in their unique medical histories to identify real-world insights into clinical care, averaging more than 7 years per patient.
  • Leverage state of the art machine learning and natural language processing methods, combined with medically trained human review to abstract uncoded observations from unstructured parts of the record. 
  • Prospectively collect records to capture evolving trends in diagnosis, treatment, and clinical outcomes.
  • Ask patients about their unique experiences managing their disease to link patient reported outcomes with physician observations found in their medical records.

Learn more about the PicnicHealth research platform 
https://picnichealth.com/research-platform

A recent survey of 1,500 people living with lupus or lupus nephritis, show that people reporting more frequent disease flares experience worsened patient outcomes. They are hospitalized more often, visit the ER more often, are less productive at work, and impaired in daily activities - all impacting their quality of life.2

We’re currently working with more than 250 LN participants to enable researchers to explore questions previously unanswerable with existing datasets. The research cohort can be leveraged to address use cases such as:

  • Associating the frequency of renal flares from patients treated with different therapeutic options with long-term clinical outcomes like ESRD.
  • Identify phenotypic markers in medical records, labs, diagnostic procedures, or patient reported data that correlate with worsening disease or worse outcomes
  • Understanding healthcare utilization stratified by disease severity classifications via renal biopsy data

This living dataset will become richer over time as more patients join and we collect more records.

Despite the importance of identifying, managing, and preventing disease flares and their overall impact on healthcare resource utilization and quality of life, no study has described the cost of renal flares in LN.3

The LN RWD Research Cohort: A First Look

We recently took a sneak peek at the data that we have collected from more than 170 patients. Click below to download a summary of our preliminary findings.

Download Infographic Below...

Do you have a research use case that requires patient medical data from the real-world to answer?

Contact us: [email protected]

Are you a patient with lupus nephritis interested in joining the cohort?

Join at: https://picnichealth.com/lupus-nephritis

References:

  1. Hoover PJ, Costenbader KH. Insights into the epidemiology and management of lupus nephritis from the US rheumatologist's perspective. Kidney Int. 2016 Sep;90(3):487-92. doi: 10.1016/j.kint.2016.03.042. Epub 2016 Jun 22.
  2. Katz P, Nelson WW, Daly RP, Topf L, Connolly-Strong E, Reed ML. Patient-reported lupus flare symptoms are associated with worsened patient outcomes and increased economic burden. J Manag Care Spec Pharm, 2020 Mar; 26(3):275-283. doi:10.18553/jmcp.2020.26.3.275.
  3. Thompson JC, Mahajan A, Scott DA, Gairy K. The economic burden of lupus nephritis: a systematic literature review. Rheumat Ther 2022, 9: 25-47. doi:10.1007/s40744-021-00368-y.

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

Learn More
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.

Learn More

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.

Join Now

Downloads

Lupus Nephritis Cohort Infographic

View Document

Downloads

Lupus Nephritis Cohort Infographic

View Document

Downloads

Lupus Nephritis Cohort Infographic

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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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