Let's Get You To The Right Place

Please choose your or your child's age group so we can share the information that's best for you:

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

Join the VISTA Study

The VISTA study, sponsored by BioMarin in collaboration with PicnicHealth, explores the real-life experiences of families affected by achondroplasia to improve future care and support. As an observational study, it requires no extra appointments, treatment, lab work, or tests.

  • Participate fully from home
  • Complete a few short surveys every six months
  • Up to $90/year in compensation, plus a free PicnicHealth account
  • Three year study
Get Started
Who is eligible to join?
The VISTA study is open to individuals living with achondroplasia who are aged 13 years or younger, and receive medical care in the US. Your child does not need to be on any treatment(s) in order to participate.

How does the VISTA study work?

You can complete the full sign-up in under 10 minutes, with no appointments or paperwork required. If you need help, contact us at [email protected].

Join Now

Quick and easy signup. Get started in minutes.

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.

We handle the hard work of gathering your records and 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, you 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.

Join the VISTA Study and unlock valuable PicnicHealth benefits

Contribute to a deeper understanding of achondroplasia

Get Started

“I became aware of the VISTA Study through connections with others I have made in the community. Joining the VISTA study for achondroplasia was important to me because collective, databased research is needed with rare conditions. Research can help analyze risk management, complication prevention, and therapeutic development to provide children living with achondroplasia a better future for their health.”

Victoria G.
VISTA research participant

FAQs

Who can sign up for the VISTA observational study?

Your child is eligible for the VISTA observational study if they are diagnosed with achondroplasia, aged 13 years or younger, and receive medical care in the United States.

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 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.

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.

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.

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.

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.

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.

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.

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.

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.