Shape the future of ATTR research

When you contribute your medical records to ATTR research, you join thousands of other patients who have participated in research and empowered their communities through PicnicHealth. You may be eligible for OPUS-W if:

  • You’re an a adult prescribed, taking, or discontinued Wainua™ (eplontersen)
    OR
  • Participating in the WAINUA Open Label Extension study
See if you’re eligible

What is OPUS-W?

OPUS-W is an observational research effort, meaning no additional appointments, lab work, or tests are required. You can participate entirely from the comfort of your home.

PicnicHealth

By allowing PicnicHealth to collect and digitize your medical records, you can participate in ATTR research while staying in control of your health data.

AstraZeneca

The AstraZeneca OPUS-W team will analyze your medical records as part of this research effort to gather insights into the day-to-day lives of individuals taking Wainua™ (eplontersen) to treat ATTR.

You’ll get a free PicnicHealth account and access to your medical history

By participating in OPUS-W, you’ll get access to any of the records we collect. Your medical records are yours to keep, forever.

PicnicHealth Account Benefits

Contribute to a deeper understanding of ATTR and Wainua™ (eplontersen)

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How It Works

Sign Up in Minutes

To sign up, simply confirm your ATTR diagnosis and provide the names of a few healthcare providers. With your consent, PicnicHealth will compile your health history into a secure, regularly updated digital timeline that only you can access.

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We’ll gather your records

PicnicHealth will do all the work to gather your medical records once you sign up. With instant, secure connections to thousands of healthcare institutions, we’re usually able to find most of your records in minutes, and we’ll organize everything into an easy-to-use dashboard.

OPUS-W Registry combines and analyzes medical records

As part of this observational research effort, the OPUS-W team may analyze your medical records alongside those of other OPUS-W participants to gain a clearer picture of how ATTR affects daily life. By combining data from many participants, the OPUS-W Team can identify patterns and insights that may not be visible to any single physician. To protect your privacy, all personal details that could identify you are removed through a process called de-identification, ensuring that researchers receive only the essential health information they need.

Records are yours to keep

We’ll continue to collect new records for the duration of the study. Any records collected are yours to keep forever, to use and share as you please.

Ready to get started?

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FAQs

Who can sign up for the OPUS-W?

OPUS-W is open to adults prescribed, taking, or discontinued WAINUA or participating in the WAINUA Open Label Extension study with a diagnosis of transthyretin-mediated amyloidosis.

About OPUS-W
What is PicnicHealth?

PicnicHealth is a leading health technology company simplifying healthcare for everyone. Through a combination of clinical expertise and technology, PicnicHealth provides patients with their organized medical records to prepare for doctor visits and advocate for themselves. Patients can also more easily participate in observational research to advance medicine and enrich lives.

About PicnicHealth
How is PicnicHealth part of the OPUS-W?

AstraZeneca has engaged PicnicHealth to help researchers collect and manage medical records in order to learn more about how WAINUA™ (eplontersen) impacts adults in the real world. When you sign up for the PicnicHealth application, PicnicHealth will do all the work of collecting, digitizing, and organizing your medical records, regardless of where you have received care. No effort is required on your part to obtain your medical records.

You will then get access to a secure online platform for you to view and share your organized records. To protect your privacy, information that directly identifies you will be removed, and a unique code will be assigned to your medical records (de-identified) before sharing with AstraZeneca for the purpose of this registry. The information gathered from patient medical records is helpful for researchers to understand real-world care patterns and short- and long-term health outcomes.

About OPUS-W
How does PicnicHealth collect my records? How long will it take?

We’ll start by searching for any of your records through our connected network. If necessary, direct requests can also be sent to your healthcare providers. Electronic records can be available within an hour, while records from individual providers may take a couple of weeks.

About PicnicHealth
How are PicnicHealth, Orsini Specialty Pharmacy, and AstraZeneca connected?

AstraZeneca is the research sponsor of OPUS-W. AstraZeneca has engaged PicnicHealth, a digital health company, to help securely collect and manage OPUS-W participants’ medical records for the purpose of this registry. Orsini is the exclusive specialty pharmacy partner for WAINUA, an FDA-approved treatment for adults.

About OPUS-W
Who will be able to see my medical records?

PicnicHealth will never share your records without your explicit consent. By signing up for this registry, you're agreeing to share your de-identified data with AstraZeneca OPUS-W Team. Outside of that, no one will be able to see your medical records unless you choose to share them by clicking "Send Records" at the top of the PicnicHealth timeline.

You will be the only person who can access your medical records on PicnicHealth. No one — including their doctor or insurance company — will be able to see their medical records unless you choose to share them by clicking "Send Records" at the top of the PicnicHealth timeline.

About PicnicHealth
Is this a clinical trial?

This is not a clinical trial. A traditional clinical trial involves testing a specific treatment, like a drug or medical device. The OPUS-W team will only review data from medical records produced during your visits to the doctor – in other words, there are no additional labs, tests, or appointments required for you to participate. You will also be asked to complete optional, short, online paid surveys.

About OPUS-W
How does PicnicHealth protect my privacy?

PicnicHealth takes privacy very seriously. Your personal information is never shared without your explicit permission. Your medical records are kept safe using the highest encryption standard available: 256-bit SSL. This is the same technology that banks use to keep account information safe.

PicnicHealth follows HIPAA-compliant practices and uses advanced end-to-end encryption and security measures, the same technology banks use to keep information secure. Your records are only shared with your permission.

About PicnicHealth
Why does AstraZeneca want to conduct this research effort?

As the manufacturer of Wainua, AstraZeneca seeks to continuously push the science of this devastating rare disease by studying patient experience, treatment journey, and the real-world treatment effects of Wainua and its impact on the quality of life. This research will help the scientific community to improve personalized treatment, inform clinical decisions, and guide future studies to develop better therapies. Additionally, it enhances patient engagement by considering their experiences and preferences.

About OPUS-W
Is there any cost to participate?

No, there is no cost to participate as you’ll receive PicnicHealth’s service free of charge as part of your participation in OPUS-W. If you would like to continue to have PicnicHealth collect your medical records, you may enroll in the service as a customer at the end of OPUS-W.

About PicnicHealth
Can I change my mind?

Yes, you can withdraw your consent at any time. When you withdraw your consent, PicnicHealth will stop collecting records. However, any data that has already been shared with OPUS-W researchers, up until the time you notify PicnicHealth to stop participating in research, cannot be changed or deleted.

About OPUS-W
How can I get more information?

For more details or assistance regarding the PicnicHealth platform and medical record services, visit our website or reach out to the PicnicHealth team at [email protected].

About PicnicHealth

“With PicnicHealth, I was able to eliminate the tedious work and stress of managing my records allowing me to focus on my care and living!”

Chelsea
PicnicHealth Research Participant

Contribute to a deeper understanding of ATTR

For more details or assistance, visit our support page or contact us directly at [email protected] or call 415-680-3085
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