Genentech and PicnicHealth are partnering on new research to better understand how paroxysmal nocturnal hemoglobinuria (PNH) affects real people like you in the Commodore Cohort study. The study combines the de-identified medical histories of many volunteers with PNH into a single research database. This gives researchers a better understanding of what PNH looks like in the real world and how care really happens during patients' lives. Ultimately, this study aims to advance the development of new treatments for better patient outcomes.
It takes just 10 minutes and you can sign up today from home. You’ll also get $20 compensation for your time.
We collect all your records so you can access them anywhere and share them with your family or doctors.
By participating in this study, we’ll build your complete medical history and keep it up-to-date free of charge.
Your private data stays that way. We are HIPAA compliant and use 256-bit military grade encryption.
By sharing your medical journey, you can help improve the journey for others in the future.
Using your real-world information empowers researchers without any travel or procedures needed.
Researchers only get de-identified data points, not any of your personal information.
Review and sign the study’s consent form, and list your doctors.
We'll collect and organize all your medical records into your PicnicHealth timeline.
We’ll update you on PNH research you helped power!
We follow the highest standards set by law.
We use the highest cryptographic standards available.
We’ll never share your personal information without your explicit permission.
If in doubt, ask. We’re here to make sure you fully understand our practices: [email protected].
An Institutional Review Board (IRB) reviews our studies to ensure participants are well informed and are opting in willingly.
De-identified medical data sets are free for qualified academic, non-commercial use.
You make the choice to proactively opt in. We’ll never share your information.
Before researchers receive your data, we remove all personally identifiable information.
If you decide you'd rather not participate in research anymore, no problem.
It takes about 3 to 4 weeks to retrieve most of your historical medical records. The timing mainly depends on how quickly your doctors respond to PicnicHealth's requests for your records.
PicnicHealth works directly with people like you to help collect and manage your medical records. That means going out and collecting all of your medical records from your different doctors and keeping them up-to-date over time. PicnicHealth will then transform your records into a timeline that makes it easier to find what you’re looking for. When you see your doctor again, PicnicHealth will update your timeline with new records. You can access your PicnicHealth timeline from anywhere and even share it with your doctors with a few clicks.
You can join this study if you have been diagnosed with paroxysmal nocturnal hemoglobinuria in the past five years, you are currently or have previously taken eculizumab (Soliris) or ravulizumab (Ultomiris), and are 18 years of age or older and have received medical care in the U.S. for the past 7 years.
By signing up for this study, you agree to share your medical records with Genentech researchers. They will only receive records stripped of any information that could be used to identify you personally. Outside of that, no one—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 your PicnicHealth timeline.
You may choose to delete your medical records from the PicnicHealth service at any time and for any reason. Just email PicnicHealth at [email protected]. Once records have been collected for the study, you can’t remove them from the study.
Yes. You can view this sample timeline.
Roche and PicnicHealth are separate companies that are partnering for this study. Roche is a biopharmaceutical company that does scientific research to develop new treatments for a range of medical conditions and PicnicHealth is a digital health company that helps patients collect and manage their medical records.
For this research study, we will collect records going back as far as possible. In most states, doctors are required to keep records for at least 7 years, but many will keep them for much longer. So how far back we can go really depends on the record keeping practices of your doctors.
Our goal is to advance the understanding of paroxysmal nocturnal hemoglobinuria, to support research to develop new drug and therefore improve the quality of care. Information from medical records is particularly useful for diseases, such as paroxysmal nocturnal hemoglobinuria, because it gives us insight into what living with the disease is really like and how treatment options work in the real world.
You can just enter as many doctors as you remember. The hospital or clinic name is usually enough and the PicnicHealth team will follow up with you if there’s any confusion. If PicnicHealth finds doctors mentioned in your records who you did not include on your doctor list, you will get an email asking for your permission to request records from that new doctor.
When you first see your timeline, it's possible that some of your medical records are not yet available. That's because PicnicHealth is still working hard to collect them for you. You should be able to see your medical records within 3 to 4 weeks of signing up. After the first month, your timeline will be updated regularly with information from your new doctor visits.
Yes! We definitely plan to publish our findings. We’ll share everything we publish back with you.
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.
Genentech will never receive your name or any of your contact information. PicnicHealth may contact you about other Genentech studies, but information that identifies you personally is kept with PicnicHealth and not shared with Genentech.
Medical records record what’s actually happening when doctors see patients, so they can be really helpful for understanding how medical care is delivered in the real world. They also contain a lot of information about how you experience disease—your symptoms, your health status, and your treatments. Putting all of this information together for a diverse group of patients will allow researchers to see patterns that no one doctor can see on his or her own.
When you sign up, you’ll read and sign a form that authorizes PicnicHealth to request your medical records on your behalf. You can e-sign this form online—no printing or mailing involved. Your doctor will then know that it's okay to share your medical records with PicnicHealth.
In the first month, some records might be missing because PicnicHealth is still collecting them for you. After the first month, if you suspect that records are still missing, you can let us know about those records by clicking "Request Records" at the top of your timeline.
Yes, you will receive a $20 gift card for signing up this study. Payment is only provided after you sign-up for the study and are confirmed that you are eligible (see eligibility criteria below). This is typically within 4 – 6 weeks of signing up for the study. If you complete the optional surveys, you will get a $20 gift card per survey after the completion of the surveys. This is typically within 4-6 weeks after completion of the surveys.
This is not a clinical trial. A traditional clinical trial involves testing a specific treatment, like a drug or medical device. In this study, we are only looking at data from medical records produced during your normal visits to the doctor. The goal is to better understand how patients across the US are being treated and why a disease looks different in different people.
No problem. PicnicHealth can work with records in any format, whether your doctor takes notes with a pen or on an iPad.
PicnicHealth will collect medical records from all the doctors, hospitals, and clinics that you tell us about. PicnicHealth does not collect dental or optometry records.
Your PicnicHealth timeline provides a single source of information for you and your doctors. It is a tool to help you coordinate care and understand your own health. You can share your timeline with any of your doctors with a few clicks. The doctor will receive a secure link and get access to your medical history.
Yes! You will be able to view your imaging files right in your PicnicHealth timeline.
You’ll receive PicnicHealth’s service free of charge for the duration of the study as long as you're a participant.
PicnicHealth will update your medical records regularly. To keep your records most up-to-date, you can always tell PicnicHealth when you have seen the doctor. Just click the “Request Records” button at the top of your timeline, and PicnicHealth will retrieve your new records for you.
At the top of your timeline, click on "Doctors" to add new doctors or medical facilities. PicnicHealth will then collect your records from your new doctors.
Yes. Your participation in this study is completely voluntary and you can withdraw at any time. If you choose to stop participating, your medical records will remain available for you through your PicnicHealth account. At that time we will stop collecting any new medical records. You can download copies of your records at any time. You can always tell PicnicHealth to delete your medical records, although the information that has already been shared with third party partners can’t be deleted.
At the end of the study, your medical records will remain available for you through your PicnicHealth account. At that time we will stop collecting any new medical records. You can download copies of your records at any time. You can always tell PicnicHealth to delete your medical records, although the information that has already been collected for the study can’t be deleted.