Shape the future of ATTR research
When you contribute your medical records to the 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 adult prescribed, taking, or discontinued Wainua™ (eplontersen); OR,
- Participating in the WAINUA Open Label Extension study
What is OPUS-W?
OPUS-W is a non-interventional research effort, meaning no additional appointments, lab work, or tests are required. You can participate entirely from the comfort of your home.
By allowing PicnicHealth to collect and digitize your medical records, you can participate in ATTR research while staying in control of your health data.
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 the OPUS-W Registry, you’ll get access to any of the records we collect. Your medical records are yours to keep, forever.
PicnicHealth Account Benefits
Access your records
Get a digitized view of your relevant medical history, accessible from anywhere, on any device.
Tools and visualizations
Zoom in on what’s most important and track trends over time.
Complete care management toolkit
Keep track of active medications and health concerns and receive clinical support.
Easy sharing
New doctor? Share your or your child’s records to get the care you need without wasting time.
Contribute to a deeper understanding of Wainua™ (eplontersen)
Sign UpHow 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.
Sign Up
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 combines and analyzes medical records
As part of this non-interventional 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?
FAQs
OPUS-W is open to adults who have been prescribed, are taking, or have discontinued WAINUA or participating in the WAINUA Open Label Extension study with a diagnosis of transthyretin-mediated amyloidosis.
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.
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. While Orsini is the exclusive specialty pharmacy partner for WAINUA, it may also be available for use by integrated delivery networks (IDNs) within qualifying IDN-owned specialty pharmacies.
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.
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.
Yes, you can withdraw your consent at any time. This will not affect your medical care or future study participation. When you withdraw, PicnicHealth will stop collecting your records, but any data collected before will remain in the study.
For details about withdrawing your study consent, including details about the surveys and data collection, please reach out to PicnicHealth at hello@picnichealth.com or call (415) 680-3085.
PicnicHealth is a leading health technology company simplifying healthcare for everyone. PicnicHealth is a partner selected by AstraZeneca to support the study. 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. PicnicHealth will only share de-identified data with the research team — meaning your name and personal information are removed before researchers access anything.
Once you enroll and provide authorization, PicnicHealth begins by searching for your records through our connected network. If necessary, direct requests can also be sent to your healthcare providers to retrieve copies of your medical records. Some electronic records can be available within an hour, while records from individual providers may take a couple of weeks. Overall, his process can take a few weeks depending on how quickly providers respond. PicnicHealth will continuously update your timeline as new records are received and processed.
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. No one outside PicnicHealth - including your doctor or insurance company - 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.
PicnicHealth takes privacy very seriously. PicnicHealth follows Health Insurance Portability and Accountability Act (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.
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 sign-up in the service as a customer at the end of the OPUS-W Study or if you are not eligible for the OPUS-W Study, you may opt to sign-up for a paid subscription.
For more details or assistance regarding the PicnicHealth platform and medical record services, visit our website or reach out to the PicnicHealth team at hello@picnichealth.com or call at 415-680-3085.
“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!”
PicnicHealth Research Participant
