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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.
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.
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.
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.
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.
With your permission, we work with your child's care providers to collect anything related to their health history: imaging files, test results, and doctor’s notes in both digital and paper format. Your child's doctors are provided with our highly secure private portal to transfer the information to us.
We extract only the information that is valuable for researchers and replace anything identifiable with a randomized ID number through our proprietary, multi-step, de-identification technology. Your child's data is then assigned a unique code, or de-identified, and then compiled with many others into a comprehensive data report, and shared with BioMarin researchers through a secure, private portal.
Your child's de-identified health data will be shared with VISTA study researchers. We will only use their collected health data in accordance with the consent provided in relation to the VISTA study. See our terms and conditions.
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.
Records Collected
Providers on Record
Partner Organizations
Answer a few questions about your medical care and which doctors you’ve seen.
Our team will collect and digitize your medical records at no cost to you. No uploads or appointments necessary.
Once we’ve digitized your records, access all of your records right from your PicnicHealth account - doctors’ notes, test results, imaging and more.
Your records are completely de-identified, then analyzed together with records from others.
Answer a few questions about your loved one's medical care and which doctors they've seen.
Our team will collect and digitize your loved one's medical records at no cost to you. No uploads or appointments necessary.
Once we’ve digitized your loved one's records, access all of their records right from your PicnicHealth account - doctors’ notes, test results, imaging and more.
Your loved one's records are completely de-identified, then analyzed together with records from others.
At PicnicHealth, we’re patients too, so we know how important it is that your loved one's private data stays private. Here’s our promise:
We protect your loved one's personal information with military grade encryption and abide by HIPAA compliant practices.
Your loved one's data is fully de-identified. We only share datasets that are structured for research, never redacted medical records.
PicnicHealth will ask for your consent every time before sharing any information with any partners. You can opt out at any time.
We use an IRB (Institutional Review Board) and work with a team of physicians to protect the best interest of our research volunteers.
At PicnicHealth, we’re patients too, so we know how important it is that your private data stays private. Here’s our promise:
We protect your personal information with military grade encryption and abide by HIPAA compliant practices.
Your data is fully de-identified. We only share datasets that are structured for research, never redacted medical records.
PicnicHealth will ask for your consent every time before sharing any information with any partners. You can opt out at any time.
We use an IRB (Institutional Review Board) and work with a team of physicians to protect the best interest of our research volunteers.
At PicnicHealth, we’re patients too, so we know how important it is that your loved one's private data stays private. Here’s our promise:
We protect your loved one's personal information with military grade encryption and abide by HIPAA compliant practices.
Your loved one's data is fully de-identified. We only share datasets that are structured for research, never redacted medical records.
PicnicHealth will ask for your consent every time before sharing any information with any partners. You can opt out at any time.
We use an IRB (Institutional Review Board) and work with a team of physicians to protect the best interest of our research volunteers.
At PicnicHealth, we’re patients too, so we know how important it is that your private data stays private. Here’s our promise:
We protect your personal information with military grade encryption and abide by HIPAA compliant practices.
Your data is fully de-identified. We only share datasets that are structured for research, never redacted medical records.
PicnicHealth will ask for your consent every time before sharing any information with any partners. You can opt out at any time.
We use an IRB (Institutional Review Board) and work with a team of physicians to protect the best interest of our research volunteers.
Answer a few questions about your loved one's medical care and which doctors they've seen.
Our team will collect and digitize your loved one's medical records at no cost to you. No uploads or appointments necessary.
Once we’ve digitized your loved one's records, access all of their records right from your PicnicHealth account - doctors’ notes, test results, imaging and more.
Your loved one's records are completely de-identified, then analyzed together with records from others.
Answer a few questions about your medical care and which doctors you’ve seen.
Our team will collect and digitize your medical records at no cost to you. No uploads or appointments necessary.
Once we’ve digitized your records, access all of your records right from your PicnicHealth account - doctors’ notes, test results, imaging and more.
Your records are completely de-identified, then analyzed together with records from others.
With your permission, we work with your child's care providers to collect anything related to their health history: imaging files, test results, and doctor’s notes in both digital and paper format. Your child's doctors are provided with our highly secure private portal to transfer the information to us.
We extract only the information that is valuable for researchers and replace anything identifiable with a randomized ID number through our proprietary, multi-step, de-identification technology. Your child's data is then assigned a unique code, or de-identified, and then compiled with many others into a comprehensive data report, and shared with BioMarin researchers through a secure, private portal.
Your child's de-identified health data will be shared with VISTA study researchers. We will only use their collected health data in accordance with the consent provided in relation to the VISTA study. See our terms and conditions.
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.
Records Collected
Providers on Record
Partner Organizations
At PicnicHealth, we’re patients too, so we know how important it is that your loved one's private data stays private. Here’s our promise:
We protect your loved one's personal information with military grade encryption and abide by HIPAA compliant practices.
Your loved one's data is fully de-identified. We only share datasets that are structured for research, never redacted medical records.
PicnicHealth will ask for your consent every time before sharing any information with any partners. You can opt out at any time.
We use an IRB (Institutional Review Board) and work with a team of physicians to protect the best interest of our research volunteers.
At PicnicHealth, we’re patients too, so we know how important it is that your private data stays private. Here’s our promise:
We protect your personal information with military grade encryption and abide by HIPAA compliant practices.
Your data is fully de-identified. We only share datasets that are structured for research, never redacted medical records.
PicnicHealth will ask for your consent every time before sharing any information with any partners. You can opt out at any time.
We use an IRB (Institutional Review Board) and work with a team of physicians to protect the best interest of our research volunteers.
Answer a few questions about your loved one's medical care and which doctors they've seen.
Our team will collect and digitize your loved one's medical records at no cost to you. No uploads or appointments necessary.
Once we’ve digitized your loved one's records, access all of their records right from your PicnicHealth account - doctors’ notes, test results, imaging and more.
Your loved one's records are completely de-identified, then analyzed together with records from others.
Answer a few questions about your medical care and which doctors you’ve seen.
Our team will collect and digitize your medical records at no cost to you. No uploads or appointments necessary.
Once we’ve digitized your records, access all of your records right from your PicnicHealth account - doctors’ notes, test results, imaging and more.
Your records are completely de-identified, then analyzed together with records from others.
With your permission, we work with your child's care providers to collect anything related to their health history: imaging files, test results, and doctor’s notes in both digital and paper format. Your child's doctors are provided with our highly secure private portal to transfer the information to us.
We extract only the information that is valuable for researchers and replace anything identifiable with a randomized ID number through our proprietary, multi-step, de-identification technology. Your child's data is then assigned a unique code, or de-identified, and then compiled with many others into a comprehensive data report, and shared with BioMarin researchers through a secure, private portal.
Your child's de-identified health data will be shared with VISTA study researchers. We will only use their collected health data in accordance with the consent provided in relation to the VISTA study. See our terms and conditions.
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.
Records Collected
Providers on Record
Partner Organizations
At PicnicHealth, we’re patients too, so we know how important it is that your loved one's private data stays private. Here’s our promise:
We protect your loved one's personal information with military grade encryption and abide by HIPAA compliant practices.
Your loved one's data is fully de-identified. We only share datasets that are structured for research, never redacted medical records.
PicnicHealth will ask for your consent every time before sharing any information with any partners. You can opt out at any time.
We use an IRB (Institutional Review Board) and work with a team of physicians to protect the best interest of our research volunteers.
At PicnicHealth, we’re patients too, so we know how important it is that your private data stays private. Here’s our promise:
We protect your personal information with military grade encryption and abide by HIPAA compliant practices.
Your data is fully de-identified. We only share datasets that are structured for research, never redacted medical records.
PicnicHealth will ask for your consent every time before sharing any information with any partners. You can opt out at any time.
We use an IRB (Institutional Review Board) and work with a team of physicians to protect the best interest of our research volunteers.
With your permission, we work with your child's care providers to collect anything related to their health history: imaging files, test results, and doctor’s notes in both digital and paper format. Your child's doctors are provided with our highly secure private portal to transfer the information to us.
We extract only the information that is valuable for researchers and replace anything identifiable with a randomized ID number through our proprietary, multi-step, de-identification technology. Your child's data is then assigned a unique code, or de-identified, and then compiled with many others into a comprehensive data report, and shared with BioMarin researchers through a secure, private portal.
Your child's de-identified health data will be shared with VISTA study researchers. We will only use their collected health data in accordance with the consent provided in relation to the VISTA study. See our terms and conditions.
At PicnicHealth, we’re patients too, so we know how important it is that your loved one's private data stays private. Here’s our promise:
We protect your loved one's personal information with military grade encryption and abide by HIPAA compliant practices.
Your loved one's data is fully de-identified. We only share datasets that are structured for research, never redacted medical records.
PicnicHealth will ask for your consent every time before sharing any information with any partners. You can opt out at any time.
We use an IRB (Institutional Review Board) and work with a team of physicians to protect the best interest of our research volunteers.
At PicnicHealth, we’re patients too, so we know how important it is that your private data stays private. Here’s our promise:
We protect your personal information with military grade encryption and abide by HIPAA compliant practices.
Your data is fully de-identified. We only share datasets that are structured for research, never redacted medical records.
PicnicHealth will ask for your consent every time before sharing any information with any partners. You can opt out at any time.
We use an IRB (Institutional Review Board) and work with a team of physicians to protect the best interest of our research volunteers.
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.
Records Collected
Providers on Record
Partner Organizations
"PicnicHealth makes it possible for patients like you and I to have a voice in the medical research community. It means the world to me that I can participate in the advancement of care and knowledge for my condition.”
"It’s important to me to bring awareness to the disease and do my part to help future patients. Sending records to researchers is just the start of what we can do!”
“I participate in research to help generations after me not to go through the same pain.”
HOW WE WORK
Rare Patient Voice (RPV) and PicnicHealth have partnered to make it simple for patients with rare and non-rare diseases to take part in studies that could revolutionize medical advancements for different patient communities. Together we are connecting patients and caregivers who wish to engage in research with studies that will provide them a platform to share their voices.
PicnicHealth’s platform connects you with a comprehensive timeline of your medical records, updated when you request new records. Best of all, qualified patients can join for free.
When you complete surveys on the PicnicHealth platform you can earn rewards. Your surveys help researchers understand your daily experience and capture insights that may not be available in your medical records.
We believe that better care happens when you have control over your records.
Join For FreeJust answer a few questions about yourself and let us know who your doctors are. As soon as you finish signing up, we’ll start contacting your doctors and hospitals.
Join Now
No calling, faxing, or paperwork for you! We’ll brave the hold music and contact every one of your doctors to make sure they’ve received and processed our request.
With your records consolidated in one place, you’ll be able to access them whenever you need them. Pull up your medical information anywhere you have internet access—and share it securely with your care team.
When you join PicnicHealth, you may be invited to complete health and well-being surveys. These surveys help researchers understand your daily experience and capture insights that may not be available in your medical records.
You can complete surveys from your PicnicHealth account, you may also receive compensation for sharing your story.
HOW WE WORK
Rare Patient Voice (RPV) and PicnicHealth have partnered to make it simple for patients with rare and non-rare diseases to take part in studies that could revolutionize medical advancements for different patient communities. Together we are connecting patients and caregivers who wish to engage in research with studies that will provide them a platform to share their voices.
PicnicHealth organizes all of your medical records in one simple timeline that updates automatically. Keep track of your health history and share important information with your care team.
Whether you're caring for a loved one or managing your own care, IgAN Warriors has your back. Explore resources, stories, and tips shared by Change Champions and experts within your IgAN community.
Just answer a few questions about yourself and let us know who your doctors are. As soon as you finish signing up, we’ll start connecting you with your medical records.
We securely store your data, but you're in charge. We know this is your most private information, so it's entirely up to you if and when you want to give access to anyone else. Whether that's a doctor or a research study, our job is to make sure your records are fully under your control.
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.
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.”
“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.
Learn more about our achondroplasia Change Champions and advocacy partners and how you can get involved!
Explore personal journeys, insights, and resilience within the achondroplasia community through our blog posts.
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