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
“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.”
“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 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.
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 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.
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.
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