Get all of your medical records in one secure account and contribute to important Sickle Cell research. If you have sickle cell, you get $50 for signing up and a free lifetime access to PicnicHealth.
Your information is secured and anonymous. Sign up in minutes.
Study Eligibility: You can enroll in this study if you (or your loved one) have been diagnosed with Sickle Cell Disease and have received medical care in the U.S. in the past 7 years.
More than anything, researchers need data from actual Sickle Cell patients-lots of data-to identify patterns and find answers.
How can we help Sickle Cell patients minimize symptoms and move into remission faster?
Are there ways to lessen the impact that Sickle Cell has on a patient’s daily life?
Can real world data help us predict what triggers Sickle Cell symptoms?
If you've been diagnosed with Sickle Cell Disease and receive care in the US, it takes just a few minutes to sign up.
No commitment—you're free to opt out at any time.
With your ok, we contact your care providers to collect your health history—imaging files, test results, and doctors' notes.
Our rigorous multi-step process wipes clean all identifying information. See our Privacy Pledge.
We combine your anonymous health data with others to create an invaluable dataset—only for researchers.
You'll get $50, a copy of your fully digitized medical records, and updates on future research findings.
PicnicHealth believes that everyone should live longer and healthier lives. We can accelerate medical innovation by making real-world health insights accessible to researchers.
We enable everyone to be a part of new medical discoveries by providing the tools and technology to collect and deliver health insights.
All health records are processed by our military grade encryption (256-bit SSL) and stored on our secured system.
We are HIPAA compliant and HITRUST certified. The Institutional Review Board also regularly reviews our practice.
So you can focus on making an impact.
Being transparent about our data practices is important to us. We want you to completely understand how we use your information.
With your permission, we work with your care providers to collect anything related to your health history: imaging files, test results, doctor’s notes in both digital and paper format. Your doctors are provided with our highly secure private portal to transfer the information to us.
We extract only the information that is valuable for researchers and replace anything identifiable with a randomized ID number through our proprietary, multi-step, de-identifcation technology. Your anonymized health dataset is then compiled with many others into a comprehensive data report, shared with research institutes through a private portal.
Your identifiable information is never shared with anyone. Only your anonymized health data will be shared with researchers who are studying the condition that you have. We will never share or resell your health data to insurance companies, marketers or employers. See our terms and conditions.
PicnicHealth partners with advocacy organizations across the country to engage with the sickle cell community and learn more about your needs. Our advocacy partners are committed to providing resources and services to sickle cell patients and their families, and we are honored to collaborate with such inspiring organizations. Below are a few of our partners.
You can join this study if you have been diagnosed with sickle cell disease, live in the U.S., and have received medical care in the U.S. in the past 7 years.
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.
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.
By signing up for this study, you're agreeing to share your medical records with researchers and organizations working in the sickle cell disease space. They will only receive records stripped of any information that could be used to identify you personally. 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 your PicnicHealth timeline.
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 sickle cell disease and to support research to improve quality of care. Information from medical records is particularly useful for rare diseases, such as sickle cell disease, because it gives us insight into what living with the disease is really like and how treatment options work in the real world, all without
needing to enroll patients in large, invasive clinical trials.
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.
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]. Once records have been collected for the study, you can’t remove them from the study.
Yes. You can view this sample timeline.
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.
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 sickle cell 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 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 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.
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 with sickle cell disease are being treated and how to advance care for patients everywhere.
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.
The study is directly sponsored by PicnicHealth. At PicnicHealth, we specialize in building de-identified medical record data sets for researchers. Our goal is to get this data into the hands of researchers who can analyze the data to answer research questions about how sickle cell disease looks and is treated out in the real world (not in a very controlled clinical trial setting) with the hope that this can ultimately lead to better care. Third party organizations can apply for access to the de-identified data. These might be government, academic, or commercial innovators. As with all PicnicHealth studies, access to the data will be free to all academic researchers.
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.
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 has put together a sickle cell disease guide with all the basics you need to know about sickle cell disease, including symptoms, how it's diagnosed, how to manage your care, what kind of treatment is available, and research into new treatments.
You’ll receive PicnicHealth’s service free of charge for as long as you’re a participant in the study.
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.