Join the VISTA Study
The VISTA study, sponsored by BioMarin in collaboration with PicnicHealth, is a long term research effort collecting real-world experiences from families like yours to help improve future care, treatment, and quality of life for individuals with achondroplasia.
- Earn $400 for enrolling
- Participate fully from home
- We collect your medical records for you
- Make a real difference in achondroplasia research
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 help@picnichealth.com.
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 healthcare providers.
With your consent, PicnicHealth will then work to compile your 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 privacy.
We take privacy seriously. When your or your child’s health data is gathered, we make sure to strip away any personal details that could identify you, 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 or your child’s de-identified data willonly be sharedwith the VISTA study researchers. You can learn more about this in our data ownership policy.
Participate and Get Compensated
By joining VISTA, you’ll receive $400 for enrolling. Your medical records play a critical role in helping researchers understand real-life care and outcomes for individuals with achondroplasia.
Join the VISTA Study and unlock valuable PicnicHealth benefits
Access your records
Get a digitized view of your child’s relevant medical history, accessible from anywhere, on any device.
Tools and visualizations
Zoom in on what’s most important and track trends over time.
Care management toolkit
Keep track of active medications and health concerns and receive clinical support.
Easy sharing
New doctor? Share your child’s records to get the care you need without wasting time.
Contribute to a deeper understanding of achondroplasia
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“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.”
VISTA research participant
FAQs
You or your child may be eligible for the VISTA Adult and Adolescent observational study if you have a diagnosis of achondroplasia, are 14 years of age or older, and receive medical care in the United States. Participation does not require being on any form of treatment.
PicnicHealth is a leading health technology company simplifying healthcare for everyone. Through a combination of clinical expertise and technology, PicnicHealth provides patients with their organized medical records to prepare for doctor visits and advocate for themselves. Patients can also more easily participate in observational research to advance medicine and enrich lives.
BioMarin has engaged PicnicHealth to help researchers collect and manage medical records in order to learn more about how achondroplasia affects adults and adolescents in the real world. When you sign up for the PicnicHealth application, PicnicHealth will do all the work of collecting, digitizing, and organizing your or your child's medical records, regardless of where you have received care. No effort is required on your part to obtain your medical records.
You will then get access to a secure online platform for you to view and share your or your child’s organized records. To protect your privacy, information that directly identifies you or your child will be removed, and a unique code will be assigned to your 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.
We’ll start by searching for any of your or your child’s records through our connected network. If necessary, direct requests can also be sent to your healthcare providers. Electronic records can be available within an hour, while records from individual providers may take a couple weeks.
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.
PicnicHealth will never share your or your child's records without your explicit consent. By signing up for this study, you're agreeing to share your or your child's de-identified data with BioMarin and achondroplasia research partners. Outside of that, no one will be able to see your or 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 or 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.
No, the VISTA study is an observational research study, meaning it does not test any specific treatment, drug, or medical device. Instead, this study will only review data from existing medical records created during your or your child’s regular doctor visits. No additional labs, tests, or appointments are required to participate.
PicnicHealth follows HIPAA-compliant practices and uses advanced end-to-end encryption and security measures, the same technology banks use to keep information secure. Your or your child’s records are only shared with your permission.
Yes, you can withdraw your consent at any time. When you withdraw your consent, PicnicHealth will stop collecting records. However, any data that has already been shared with VISTA researchers, up until the time you notify PicnicHealth to stop participating in research, cannot be changed or deleted.
No, there is no cost to participate as you’ll receive PicnicHealth’s service free of charge as part of your participation in the VISTA observational study. If you would like to continue to have PicnicHealth collect your or your child's medical records, you may enroll in the service as a customer at the end of the VISTA Study.
For more details or assistance regarding the PicnicHealth platform and medical record services, visit www.picnichealth.com or reach out to the PicnicHealth team at hello@picnichealth.com.