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 SG-ASMD@picnichealth.com
You can join if you (or your child) have been diagnosed with chronic forms of acid sphingomyelinase deficiency (ASMD, also known as Niemann-Pick disease type B, or A/B). You must be 21 years of age or younger and live in the U.S. Parents must enroll children under the age of 18. You cannot participate if you have been diagnosed with infantile neurovisceral ASMD.
PicnicHealth works directly with people like you to collect and manage medical records. That means going out and collecting all medical records from different doctors. PicnicHealth digitizes the records so that it’s easy for you to read and understand the medical information. When you see the doctor again, PicnicHealth will collect the new records.
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. For new visits, you can get your records faster by clicking the "Request Records" button at the top of your account.
By signing up for this study, you're agreeing to share medical records with Sanofi Genzyme researchers, but they will only receive de-identified records that do not include any personally identifying information. Outside of that, no one will be able to see medical records unless you choose to share them by clicking "Share Timeline" at the top of your PicnicHealth account.
PicnicHealth and Sanofi Genzyme are separate companies that are partnering for this study. Sanofi Genzyme is a pharmaceutical company that conducts 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.
Your PicnicHealth account provides a single source of information for you (or your child’s) doctors. It is a tool to help you coordinate care and understand your health. You can share your medical records with your doctors with a few clicks. The doctor will receive a secure link and get access to your (or your child’s) medical history.
For this research study, we will collect records that go back as far as possible. In most states, doctors are required to keep records for 7 years, but some keep them for longer.
Sanofi Genzyme will never receive your name or any of your contact information.
Yes, medical records help research, especially research on rare diseases such as ASMD where limited data exists today. Medical records track what happens when you see the doctor, so they can be helpful for understanding how care is delivered. They contain information about symptoms, health status, and treatments. Putting all of this information together for a group of people will allow researchers to see patterns that no one doctor can see on his or her own.
No. You’ll receive PicnicHealth’s services free of charge for one year.
It's possible that not all of your (or your child’s) medical records will be immediately available. That's because PicnicHealth is still collecting them for you. You should be able to see your medical records within a month of signing up.
You may choose to delete medical records and data from the PicnicHealth service at any time and for any reason. Just email PicnicHealth at SG-ASMD@picnichealth.com. Once medical records have been collected for the study, you can’t remove them from the study. Any information provided to Sanofi Genzyme will be used for research purposes only.
This is not a clinical trial. A 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 that come from your (or your child’s) routine healthcare.
After one year, you can still use your PicnicHealth account to view your (or your child’s) medical records that were added to your account during the study. No new records will be added unless you choose to purchase a subscription on your own. We will contact you if this study is extended or if new research opportunities arise.
In the first month, your (or your child’s) medical records might be missing because PicnicHealth is collecting them for you. After the first month, if you suspect that records are still missing, you can let us know by clicking "Request Records" at the top of your account.
PicnicHealth takes privacy very seriously. Your personal data never gets shared without your explicit permission. 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.
Any publications resulting from this research will be shared with you.
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.
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 the records who you did not include in your doctor list, you will get an email asking for your permission to request records from that new doctor.
Yes. You will be able to view your (or your child’s) imaging files right in your PicnicHealth account.
When you sign up, you’ll read and sign a form that authorizes PicnicHealth to request your (or your child’s) medical records on your behalf. You can e-sign this form online—no printing or mailing involved. Your doctor will then know it is okay to share your medical records with PicnicHealth.
PicnicHealth will update your (or your child’s) medical records regularly. To keep medical records most up-to-date, you can always tell PicnicHealth when you (or your child) have an appointment. Just click the “Request Records” button at the top of your account.
No problem. PicnicHealth can work with data in any format, whether your doctor takes notes with a pen or on an iPad.
At the top of your account, click on "Doctors" to add new doctors or facilities. PicnicHealth will then collect your (or your child’s) medical records from the new doctors.
After one year, we will stop collecting your (or your child’s) new medical records, but the medical records we already collected will be available to you through your PicnicHealth account. You can download copies at any time. You can always tell PicnicHealth to delete your medical records, although the information that has already been collected for this study can’t be deleted.
