Frequently Asked Questions
Can medical records really help with research?

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.

What to Expect
Who can sign up for the VISTA observational study?

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.

About the VISTA Study
What does PicnicHealth do?

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.

About PicnicHealth
Who will be able to see my child's medical records?

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.

Data and Privacy
How long will it take to get my child's medical records?

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.

Data and Privacy
Will PicnicHealth cost me anything?

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.

About PicnicHealth
How is PicnicHealth part of the VISTA observational 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.

About the VISTA Study
Will my child's medical records be secure?

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.

What to Expect
How far back will you collect historical records?

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.

Data and Privacy
How are PicnicHealth and BioMarin connected?

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.

About the VISTA Study
How can I use my child's PicnicHealth timeline?

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.

What to Expect
Can I delete my child's medical records from PicnicHealth?

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.

Data and Privacy
What kinds of medical records do you collect?

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.

What to Expect
Is this a clinical trial?

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.

About the VISTA Study
Can I see what my records will look like in my PicnicHealth account?

Yes. You can view this sample timeline.

What to Expect
What if I can't remember the names of all my child's doctors?

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.

What to Expect
What should I do if I notice there are medical records missing from my child's PicnicHealth timeline?

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]

What to Expect

Your family’s lived experience with achondroplasia could provide key insights into future research

We know that achondroplasia can impact a person in a variety of ways, beyond just growth. VISTA is an observational study designed to create a holistic picture of the achondroplasia journey for children and young adults – including quality of life and care.

Learn More
Study Eligibility: The VISTA study is open to individuals living with achondroplasia who are less than 18 years old and receive medical care in the US. Your child does not need to be on any treatment(s) in order to participate.

“Research is extremely important to me. With research we will be able to fully understand if there are preventative measures that can be taken that could either slow the progression of other symptoms or totally eliminate them.”

VISTA research participant

“Research is what gives doctors the information they need to best treat my child. It is how we get new medicines. It develops new things to improve the quality of life. We're grateful for research, so very grateful.”

VISTA research participant

What is the VISTA study?

VISTA is a research study in collaboration with PicnicHealth, sponsored by BioMarin.

Through information collected during this research effort, we hope to better understand what life looks like in the real world for families impacted by achondroplasia.

The VISTA study is observational, meaning there are no additional appointments, lab work, or tests required to participate. Everything can be completed from the comfort of your home.

Join For Free

What does participation look like?

To sign up, all you need to do is confirm achondroplasia diagnosis, and provide the names of a few of your child's healthcare providers.

With your consent, PicnicHealth will then work to compile your child's complete health history into a digital timeline. All this information will be securely transferred to a private portal, that is updated regularly which only you can access.

Protecting Your Child's Privacy

We take privacy seriously.  When your child’s health data is gathered, we make sure to strip away any personal details that could identify them, using a process we call de-identification. This way researchers get the valuable health information they need, without any of the private information they don’t.  

Your child’s de-identified data will only be shared with the VISTA study researchers.  You can learn more about this in our data ownership policy.

Participate and Get Compensated

By joining VISTA, both you and your child will have the opportunity to complete short (10-15 minutes long) surveys every six months about health and daily life, right from your Picnichealth account. These surveys are not just a way for you to earn compensation – they’re also a crucial tool for researchers, helping them understand aspects of your child’s health that aren’t captured in medical records.

The power of community in research

Learn more about our achondroplasia Change Champions and advocacy partners and how you can get involved!

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