Access your records from anywhere. Share your full medical history instantly with your family or doctors.
By participating in this PicnicHealth and Ultragenyx study, we’ll collect and organize your complete medical history for free.
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 allows researchers to improve care faster, without extra visits from you.
Researchers only get de-identified data points, not any of your personal information.
Sign up, review the consent form, share the names of your doctors and healthcare providers, and answer a few basic questions.
PicnicHealth compiles and anonymizes your medical records.
Researchers use this real-world data to advance Wilson disease research.
As a patient-centered company, PicnicHealth values your privacy and security. We protect your information by using end-to-end encryption and abiding by HIPAA compliant practices.
PicnicHealth will ask for your consent before sharing any information with any partners. Any personally identifying information will be removed from your records before sharing with Ultragenyx.
We do not send researchers redacted medical records. Instead, we share de-identified datasets with only the information needed for research.
PicnicHealth uses an IRB (Institutional Review Board) to protect and act in the best interest of our volunteers.
An Institutional Review Board (IRB) reviews our studies to ensure participants are well informed and are opting in willingly.
Anonymized medical data sets are free for qualified academic, non-commercial use.
You make the choice to proactively opt in.
Before researchers receive your data, we remove all personally identifiable information.
If you decide you'd rather not participate in research anymore, no problem.
PicnicHealth will see your medical records to process them. You can choose to share your records with your healthcare providers or loved ones by clicking "Send Records" the top of your PicnicHealth timeline. By signing up for this study, you're agreeing to share your de-identified health information and data from your medical records with Ultragenyx to better understand Wilson disease. For purposes of the study, they will receive health data that are stripped of your name, address, and similar personal identifiers. In certain situations, to make sure that the study is being done properly or to check the quality of the data, regulatory authorities, institutional review board members, or study auditors associated with may be granted direct access to copies of your medical records (i.e. they may see your medical and personal information) without violating the confidentiality of your data.
You can join this study if you (or your child) have been diagnosed with Wilson disease and live in the U.S.
PicnicHealth works directly with patients 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.
It takes about 3 to 4 weeks to retrieve most of your historical medical records. After that, it can take another couple of months for us to track down the oldest and trickiest records to access. The timing depends on how quickly your doctors respond to PicnicHealth's requests for your records.
Yes! We believe it’s important for you to see the results of research produced using your data and we’ll make every effort to share published results back with you.
Our goal is to advance the understanding of Wilson disease and to support research to improve quality of care. Information from medical records is particularly useful for rare diseases, such as Wilson disease, because it gives us insight into what living with the disease is really like and how treatment options work in the real world. Some Wilson disease research objectives that your health information can help answer include:
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.
Yes. You can view this sample timeline.
You may choose to delete your medical records and data from the PicnicHealth service at any time and for any reason. Just email PicnicHealth at [email protected]. This will not affect data that has been stripped of your name and other similar personally identifying information and already shared for research purposes.
PicnicHealth takes privacy very seriously. Your personal data 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.
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 a month of signing up. After the first month, your timeline will be updated regularly with information from your new doctor visits.
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.
Medical records record what’s actually happening when doctors see patients, so they can be really helpful for understanding how care is delivered in the real world. They also contain a lot of information about how you experience Wilson disease--your symptoms, your health status, and your treatments. Putting all of this information together for a diverse group of patients will allow the scientific community to see patterns that no one doctor can see on his or her own.
You can enter all your doctors, including primary care physician or pediatrician, metabolic specialist, geneticist, cardiologist, neurologist, endocrinologist, ophthalmologist, and more. In addition, you can enter other allied healthcare professionals that help manage Wilson disease, including dietitians and physical therapists.
In the first months, 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.
This is an observational study, not a clinical trial. A clinical trial involves testing a specific treatment, like a drug or medical device. In this study, we are looking at data from medical records produced during your normal visits to your healthcare providers and your responses to questionnaires about your care experiences. The goal is to better understand how Wilson disease is diagnosed, managed and treated, and what other conditions individuals diagnosed with Wilson disease may experience in order to advance researchers’ understanding of Wilson disease and hopefully improve future care for people living with Wilson disease.
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.
PicnicHealth and Ultragenyx are separate companies that are partnering for this study. PicnicHealth is a digital health company that helps patients collect and manage their medical records which can be used to support research. Ultragenyx is a biopharmaceutical company that does scientific research to develop new treatments for a range of rare medical conditions, including Wilson's disease.
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.
No problem. PicnicHealth can work with data in any format, whether your doctor takes notes with a pen or on an iPad.
Researchers interested in studying Wilson disease using the de-identified data collected can contact PicnicHealth at [email protected]. Researchers will be asked to submit an application which outlines their research study rationale, goals, and analysis approach. Applications require background information including personnel involved, relevant credentials, associated institutions, and any conflicts of interest. PicnicHealth then follows a process to evaluate potential partners based on the validity of the research questions and commitment to advance science for the public good.
Yes! You will be able to view your imaging files right in your PicnicHealth timeline.
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.
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.
You’ll receive PicnicHealth’s service free of charge for as long as you’re a participant in the study.
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.
