Get your medical records to change what the brightest minds in medicine know about amyotrophic lateral sclerosis (ALS).
Get $100 and free access to your complete medical records in your PicnicHealth timeline as a study benefit.Join Now
PicnicHealth is partnering with people living with ALS on a first-of-its-kind research study. With your help, we are combining hundreds of anonymized medical records to form a cutting-edge research database that lets us understand the ALS experience.
After you list your doctors, we’ll do all of the work to collect your medical records (yours to keep), extract only the most important parts of your record without personal info, and compile your anonymous data with thousands of other ALS patients.
How much do gastrostomy tubes help patients at different stages of disease?
Do current treatments only work for early stage patients or for everyone? Who should take them?
What are the first symptoms that someone usually notices and which types of doctors do they tend to see before they get to a neurologist?
If you've been diagnosed with ALS 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.
Sign up in 10 minutes from home. Give us your consent and list your doctors.
With your consent, we collect your records from the doctors you list. We’ll do all the work for you, and you’ll get access to any records we collect.
We strip out your personal info then create a complete dataset of thousands of ALS experiences.
We keep your records up to date for you and share back research results over time.
At PicnicHealth, we’re patients too, so we know how important it is that your private data stays private. here’s our promise:
By signing up for this study, you agree to share your medical records with medical 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.
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.
Anyone who has been diagnosed, or is a caregiver with permission to share the medical history of the person diagnosed, and lives in the U.S.
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 a particular research initiative, you can’t remove them from that research initiative.
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 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.
Our goal is to advance the understanding of various diseases while supporting research to improve the quality of care. Information from medical records is particularly useful for diseases, because it gives us insight into what living with the disease is really like and how treatment options work in the real world.
Yes. You can view this sample timeline.
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.
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.
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.
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.
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.
No problem. PicnicHealth can work with records in any format, whether your doctor takes notes with a pen or on an iPad.
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 your experiences—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.
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.
This is not a clinical trial. A traditional clinical trial involves testing a specific treatment, like a drug or medical device. In this research, 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.
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.
The research 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 diseases look and are 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 research, access to the data will be free to all academic researchers.
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 research 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.