Shape the future of PNH research
When you contribute your medical records to the PNH research, you join thousands of other patients who have participated in research and empowered their communities through PicnicHealth.
You may be eligible for this study if:
- You have a confirmed PNH diagnosis
- You intend to initiate danicopan treatment as an add-on to ravulizumab or eculizumab
- You are aged 18 or older and receive medical care in the US
What is PLEDGE?
PLEDGE 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.
By allowing PicnicHealth to collect and digitize your medical records, you can participate in PNH research while staying in control of your health data.
The Alexion Study team will analyze your medical records as part of this research effort to gather insights into the day-to-day lives of individuals and families taking danicopan to treat PNH.
You’ll get a free PicnicHealth account and access to your medical history
By participating in PLEDGE, 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.
Easy sharing
New doctor? Share your records to get the care you need without wasting time.
Contribute to a deeper understanding of PNH and danicopan
Sign UpHow It Works
Sign Up in Minutes
To sign up, simply confirm your PNH 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.
We combine and analyze medical records
As part of this observational study, the PLEDGE team may analyze your medical records alongside those of other study participants to gain a clearer picture of how PNH affects daily life. By combining data from many participants, the study 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 stop collecting new records, but any records collected are yours to keep forever to use and share as you please.
Ready to get started?
FAQs
This study is open to adults diagnosed with PNH who intend to initiate danicopan treatment as an add-on to ravulizumab or eculizumab.
Alexion has engaged PicnicHealth to help researchers collect and manage medical records in order to learn more about how PNH affects 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 Alexion for the purpose of this study. The information gathered from patient medical records is helpful for researchers to understand real world disease and treatment experiences patients with PNH have.
Alexion is the research sponsor of PLEDGE. Alexion has engaged PicnicHealth, a digital health company, to help securely collect and manage study participants’ medical records for the purpose of this study.
This is not a clinical trial. A traditional clinical trial involves testing a specific treatment, like a drug or medical device. The PLEDGE study 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.
Yes. You will be asked to complete online paid surveys as part of the study at enrollment and again two weeks, two months, and six months after initiating treatment. It’s important you complete these surveys in a timely manner as they are intended to assess danicopan’s impact on your condition.
Joining this study is completely optional. If you choose not to participate, your medical care, including your Alexion treatment and OneSource enrollment, will stay the same.
If you do join, you can leave at any time. This will not affect your medical care, future study participation, or OneSource enrollment. When you withdraw, PicnicHealth will stop collecting your records, but any data collected before will remain in the study.
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.
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.
PicnicHealth will never share your records without your explicit consent. By signing up for this study, you're agreeing to share your de-identified data with the Alexion study 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.
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 the PLEDGE study. 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 PLEDGE.
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].
Questions about your medication should be directed to OneSource.
“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
