Medical records document what’s actually happening when doctors see patients, so they can be really helpful for understanding how care is delivered. They also contain a lot of information about achondroplasia – your child's symptoms, health status, and medication(s). 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 their own, enabling the community to improve care for individuals living with achondroplasia.

Your child is eligible for the VISTA observational study if they are diagnosed with achondroplasia, younger than 18 years of age, and receive medical care in the United States.

PicnicHealth works directly with people like you to help collect and manage your medical records. When you consent to participating in one of their studies, like VISTA, you are giving them permission to do all the work of collecting, organizing, and updating all of your child's medical records from their different doctors. PicnicHealth will then transform those records into a digital Timeline that makes it easier to find what you’re looking for. When you see the doctor again, PicnicHealth will update your Timeline with new records. You can access the PicnicHealth Timeline from anywhere you have internet access and securely share it with your doctors, care team, and family members with a few clicks.

PicnicHealth will never share your child's records without your explicit consent. By signing up for this study, you're agreeing to share your child's de-identified data with BioMarin and achondroplasia research partners. Outside of that, no one will be able to see your child's medical records unless you choose to share them by clicking "Send Records" at the top of the PicnicHealth timeline.

You will be the only person who can access your child's medical records on PicnicHealth. No one — including their doctor or insurance company — will be able to see their medical records unless you choose to share them by clicking "Send Records" at the top of the PicnicHealth timeline.

It takes about 4 to 6 weeks to retrieve most historical medical records. The timing mainly depends on how quickly your child's doctors respond to PicnicHealth's requests for records.

No, there is no cost to participate. You’ll receive PicnicHealth’s service free of charge ($650 value) as part of your participation in the VISTA observational study. If you would like to continue to have PicnicHealth collect your child's medical records, you may enroll in the service as a customer at the end of the VISTA Study.

BioMarin has engaged PicnicHealth to help researchers collect and manage medical records in order to learn more about how achondroplasia affects children and young adults in the real world. When you sign up for the PicnicHealth application, PicnicHealth will do all the work of collecting, digitizing, and organizing your child's medical records, regardless of where your child has received care. No effort is required on your part to obtain your child’s medical records.

You will then get access to a secure online platform for you to view and share your organized records. To protect your child’s privacy, information that directly identifies your child will be removed, and a unique code will be assigned to their medical records (de-identified) before sharing with BioMarin and other vetted achondroplasia researchers for the purpose of this study. The information gathered from patient medical records is helpful for researchers to understand real-world care patterns and short- and long-term health outcomes.

PicnicHealth and BioMarin take privacy very seriously. Your child's 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.

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 child's doctors.

BioMarin is the research sponsor of the VISTA observational study. BioMarin has engaged PicnicHealth, a digital health company, to help securely collect and manage study participants’ medical records for the purpose of this study.

Your child's PicnicHealth Timeline provides a single source of information for you, your child, and your doctors. It is a tool to help you coordinate care and understand your child's health. You can share their Timeline with any of their doctors, family members, or care team with a few clicks. That person will receive a secure link and get access to your child's medical history. You also have the ability to also discontinue or pause their access.

You may choose to delete your child's medical records from the PicnicHealth service at any time and for any reason. Just email PicnicHealth at [email protected]. However, any data that has already been shared with a research partner, up until the time you notify PicnicHealth to stop participating in research, cannot be changed or deleted.

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.

This is not a clinical trial. A traditional clinical trial involves testing a specific treatment, like a drug or medical device. The observational VISTA study will only review data from medical records produced during your child's visits to the doctor – in other words, there are no additional labs, tests, or appointments required for you and your child to participate. You will also be asked to complete optional, short, online paid surveys.

Yes. You can view this sample timeline.

That's ok. 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 records who you did not include on your child's doctor list, you will get an email asking for your permission to request records from that new doctor.

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. If you suspect that any information on your child's Timeline is incorrect, please contact us at [email protected]