Have questions? Speak with a member of our team by calling 

Why join?

Get your records, give to science

Your health in your hands.

Access all of your medical records directly from your PicnicHealth account. Just go to your appointments, and we do the rest.

  • View doctors’ notes, test results, medications, imaging, and more.
  • Search your records by visit date, doctor, location, or keyword.
  • We’ll update you when we add new records.

Share records seamlessly.

Coordinate your healthcare with a click. PicnicHealth makes it easy to share records with a new specialist, or just keep your family in the loop.

  • Share records directly via email, text message, or link.
  • Set custom security measures to share your records securely.
  • Pause or remove access any time.

Accelerate research from home.

Contributing to research has never been easier. Earn rewards for sharing your records with researchers, answering questions about your health, and referring friends.

  • Share your de-identified records with FSGS researchers.
  • Earn rewards for completing surveys about your health.
  • Refer members of your community to participate.
Research Impact

Your records make a difference

Data contained in medical records tells the true story of each individual's journey with FSGS. This information is powerful for you, your loved ones, and the FSGS community.

Medical records help researchers learn:

  • Can we provide patients with new treatments without a formal clinical trial?
  • How can we examine diseases over time to find what risk factors correlate with occurrence and progression?
  • How do we understand how medical treatments work for real people in the normal course of care?
8.1M+

Records Collected

250k+

Providers on Record

50+

Partner Organizations

How it works

1.  Sign up in minutes

Answer a few questions about your medical care and which doctors you’ve seen.

2. We gather your records

Our team will collect and digitize your medical records at no cost to you. No uploads or appointments necessary.

3. Manage your health

Once we’ve digitized your records, access all of your records right from your PicnicHealth account - doctors’ notes, test results, imaging and more.

4. Opt in to research

Your records are completely de-identified, then analyzed together with records from others.

How it works

1.  Sign up in minutes

Answer a few questions about your loved one's medical care and which doctors they've seen.

2. We gather your loved one's records

Our team will collect and digitize your loved one's medical records at no cost to you. No uploads or appointments necessary.

3. Manage your loved one's health

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.

4. Opt in to research

Your loved one's records are completely de-identified, then analyzed together with records from others.

REAL PEOPLE, REAL STORIES

Medical records tell a story

Your story matters, and we want to help make your voice heard in research. Read through some of our participant's testimonials to see why they support PicnicHealth in making a difference in real-world research and their communities.

"After the initial shock and devastation of my diagnosis, I wanted to fight the disease in any way I could, and participating in medical research became my way of fighting back. Research has been successful in helping to improve treatments, but until there’s a cure, my fight will continue."

Lisa Marie
PicnicHealth Research Participant

“The thought of my voice being heard in the world of medicine is really what motivated me to join this study. Not only to advocate for myself but others and knowing the advocacy put forth will have both a powerful and positive impact.”

Chinara
PicnicHealth Research Participant

Privacy & Security

At PicnicHealth, we’re patients too, so we know how important it is that your private data stays private. Here’s our promise:

Security

We protect your personal information with military grade encryption and abide by HIPAA compliant practices.

Privacy

Your data is fully de-identified. We only share datasets that are structured for research, never redacted medical records.

Transparency

PicnicHealth will ask for your consent every time before sharing any information with any partners. You can opt out at any time.

Responsibility

We use an IRB (Institutional Review Board) and work with a team of physicians to protect the best interest of our research volunteers.

Privacy & Security

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:

Security

We protect your loved one's personal information with military grade encryption and abide by HIPAA compliant practices.

Privacy

Your loved one's data is fully de-identified. We only share datasets that are structured for research, never redacted medical records.

Transparency

PicnicHealth will ask for your consent every time before sharing any information with any partners. You can opt out at any time.

Responsibility

We use an IRB (Institutional Review Board) and work with a team of physicians to protect the best interest of our research volunteers.

How it works

1.  Sign up in minutes

Answer a few questions about your medical care and which doctors you’ve seen.

2. We gather your records

Our team will collect and digitize your medical records at no cost to you. No uploads or appointments necessary.

3. Manage your health

Once we’ve digitized your records, access all of your records right from your PicnicHealth account - doctors’ notes, test results, imaging and more.

4. Opt in to research

Your records are completely de-identified, then analyzed together with records from others.

How it works

1.  Sign up in minutes

Answer a few questions about your loved one's medical care and which doctors they've seen.

2. We gather your loved one's records

Our team will collect and digitize your loved one's medical records at no cost to you. No uploads or appointments necessary.

3. Manage your loved one's health

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.

4. Opt in to research

Your loved one's records are completely de-identified, then analyzed together records from others.

Why join?

Get your records, give to science

Your health in your hands.

Access all of your medical records directly from your PicnicHealth account. Just go to your appointments, and we do the rest.

  • View doctors’ notes, test results, medications, imaging, and more.
  • Search your records by visit date, doctor, location, or keyword.
  • We’ll update you when we add new records.

Share records seamlessly.

Coordinate your healthcare with a click. PicnicHealth makes it easy to share records with a new specialist, or just keep your family in the loop.

  • Share records directly via email, text message, or link.
  • Set custom security measures to share your records securely.
  • Pause or remove access any time.

Accelerate research from home.

Contributing to research has never been easier. Earn rewards for sharing your records with researchers, answering questions about your health, and referring friends.

  • Share your de-identified records with FSGS researchers.
  • Earn rewards for completing surveys about your health.
  • Refer members of your community to participate.
Research Impact

Your records make a difference

Data contained in medical records tells the true story of each individual's journey with FSGS. This information is powerful for you, your loved ones, and the FSGS community.

Medical records help researchers learn:

  • Can we provide patients with new treatments without a formal clinical trial?
  • How can we examine diseases over time to find what risk factors correlate with occurrence and progression?
  • How do we understand how medical treatments work for real people in the normal course of care?
8.1M+

Records Collected

250k+

Providers on Record

50+

Partner Organizations

REAL PEOPLE, REAL STORIES

Medical records tell a story

Your story matters, and we want to help make your voice heard in research. Read through some of our participant's testimonials to see why they support PicnicHealth in making a difference in real-world research and their communities.

"After the initial shock and devastation of my diagnosis, I wanted to fight the disease in any way I could, and participating in medical research became my way of fighting back. Research has been successful in helping to improve treatments, but until there’s a cure, my fight will continue."

Lisa Marie
PicnicHealth Research Participant

“The thought of my voice being heard in the world of medicine is really what motivated me to join this study. Not only to advocate for myself but others and knowing the advocacy put forth will have both a powerful and positive impact.”

Chinara
PicnicHealth Research Participant

Privacy & Security

At PicnicHealth, we’re patients too, so we know how important it is that your private data stays private. Here’s our promise:

Security

We protect your personal information with military grade encryption and abide by HIPAA compliant practices.

Privacy

Your data is fully de-identified. We only share datasets that are structured for research, never redacted medical records.

Transparency

PicnicHealth will ask for your consent every time before sharing any information with any partners. You can opt out at any time.

Responsibility

We use an IRB (Institutional Review Board) and work with a team of physicians to protect the best interest of our research volunteers.

Privacy & Security

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:

Security

We protect your loved one's personal information with military grade encryption and abide by HIPAA compliant practices.

Privacy

Your loved one's data is fully de-identified. We only share datasets that are structured for research, never redacted medical records.

Transparency

PicnicHealth will ask for your consent every time before sharing any information with any partners. You can opt out at any time.

Responsibility

We use an IRB (Institutional Review Board) and work with a team of physicians to protect the best interest of our research volunteers.

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REAL PEOPLE, REAL STORIES
"After the initial shock and devastation of my diagnosis, I wanted to fight the disease in any way I could, and participating in medical research became my way of fighting back. Research has been successful in helping to improve treatments, but until there’s a cure, my fight will continue."
Lisa Marie
PicnicHealth Research Participant
REAL PEOPLE, REAL STORIES
"After the initial shock and devastation of my diagnosis, I wanted to fight the disease in any way I could, and participating in medical research became my way of fighting back. Research has been successful in helping to improve treatments, but until there’s a cure, my fight will continue."
Lisa Marie
PicnicHealth Research Participant
REAL PEOPLE, REAL STORIES
“The thought of my voice being heard in the world of medicine is really what motivated me to join this study. Not only to advocate for myself but others and knowing the advocacy put forth will have both a powerful and positive impact.”
Chinara
PicnicHealth Research Participant

Privacy & Security

At PicnicHealth, we’re patients too, so we know how important it is that your private data stays private. Here’s our promise:

Security

We protect your personal information with military grade encryption and abide by HIPAA compliant practices.

Privacy

Your data is fully de-identified. We only share datasets that are structured for research, never redacted medical records.

Transparency

PicnicHealth will ask for your consent every time before sharing any information with any partners. You can opt out at any time.

Responsibility

We use an IRB (Institutional Review Board) and work with a team of physicians to protect the best interest of our research volunteers.

Privacy & Security

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:

Security

We protect your loved one's personal information with military grade encryption and abide by HIPAA compliant practices.

Privacy

Your loved one's data is fully de-identified. We only share datasets that are structured for research, never redacted medical records.

Transparency

PicnicHealth will ask for your consent every time before sharing any information with any partners. You can opt out at any time.

Responsibility

We use an IRB (Institutional Review Board) and work with a team of physicians to protect the best interest of our research volunteers.

Your records make a difference

Data contained in medical records tells the true story of each individual's journey with FSGS. This information is powerful for you, your loved ones, and the FSGS community.

Medical records help researchers learn:

  • Can we provide patients with new treatments without a formal clinical trial?
  • How can we examine diseases over time to find what risk factors correlate with occurrence and progression?
  • How do we understand how medical treatments work for real people in the normal course of care?

How does the PicnicHealth Application work

If your child is enrolled in the VISTA observational study, and receives care in the US, it takes just a few minutes to sign up.
No commitment—you're free to opt-out at any time.

Gather health history

After sign-up and with your permission, we contact your child's care providers to collect their health history—imaging files, test results, and doctors' notes.

Remove identifying information and key-code your data

Our rigorous multi-step process removes all identifying information. See our Privacy Pledge. We will assign your child's data a unique identifier before sharing with BioMarin researchers.

Compile for research

We combine your child's de-identified health data with data from other participants to create an invaluable dataset—only for VISTA researchers.

If you consent to participate in VISTA and sign up for the PicnicHealth application, you will be able to gain access to your child’s digitized medical records for free, for the duration of the study or until you withdraw them from the study, or cancel your PicnicHealth application. You can maintain services to the PicnicHealth application after the end of the VISTA study at your own expense.

Join Now
Why join?

Get your records, give to science

Your health in your hands.

Access all of your medical records directly from your PicnicHealth account. Just go to your appointments, and we do the rest.

  • View doctors’ notes, test results, medications, imaging, and more.
  • Search your records by visit date, doctor, location, or keyword.
  • We’ll update you when we add new records.

Share records seamlessly.

Coordinate your healthcare with a click. PicnicHealth makes it easy to share records with a new specialist, or just keep your family in the loop.

  • Share records directly via email, text message, or link.
  • Set custom security measures to share your records securely.
  • Pause or remove access any time.

Accelerate research from home.

Contributing to research has never been easier. Earn rewards for sharing your records with researchers, answering questions about your health, and referring friends.

  • Share your de-identified records with FSGS researchers.
  • Earn rewards for completing surveys about your health.
  • Refer members of your community to participate.
REAL PEOPLE, REAL STORIES

Medical records tell a story

Your story matters, and we want to help make your voice heard in research. Read through some of our participant's testimonials to see why they support PicnicHealth in making a difference in real-world research and their communities.

"After the initial shock and devastation of my diagnosis, I wanted to fight the disease in any way I could, and participating in medical research became my way of fighting back. Research has been successful in helping to improve treatments, but until there’s a cure, my fight will continue."

Lisa Marie
PicnicHealth Research Participant

“The thought of my voice being heard in the world of medicine is really what motivated me to join this study. Not only to advocate for myself but others and knowing the advocacy put forth will have both a powerful and positive impact.”

Chinara
PicnicHealth Research Participant
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Frequently Asked Questions
Who can join this study?

Anyone who has been diagnosed, or is a caregiver with permission to share the medical history of the person diagnosed, and lives in the U.S.

Study Basics
What does PicnicHealth do?

PicnicHealth works directly with people like you to help collect and manage your medical records. That means going out and collecting all of your medical records from your different doctors and keeping them up-to-date over time. PicnicHealth will then transform your records into a timeline that makes it easier to find what you’re looking for. When you see your doctor again, PicnicHealth will update your timeline with new records. You can access your PicnicHealth timeline from anywhere and even share it with your doctors with a few clicks.

About PicnicHealth
How long will it take to get my medical records?

It takes about 3 to 4 weeks to retrieve most of your historical medical records. The timing mainly depends on how quickly your doctors respond to PicnicHealth's requests for your records.

What to Expect
Who will be able to see my medical records?

By signing up for this study, you agree to share your medical records with medical researchers. They will only receive records stripped of any information that could be used to identify you personally. Outside of that, no one—including your doctor or insurance company—will be able to see your medical records unless you choose to share them by clicking "Send Records" at the top of your PicnicHealth timeline.

Data and Privacy
Can I see what my records will look like in my PicnicHealth account?

Yes. You can view this sample timeline.

About PicnicHealth
What is the purpose of the study?

Our goal is to advance the understanding of various diseases while supporting research to improve the quality of care. Information from medical records is particularly useful for diseases, because it gives us insight into what living with the disease is really like and how treatment options work in the real world.

Study Basics
What if I can’t remember the names of all my doctors?

You can just 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 your records who you did not include on your doctor list, you will get an email asking for your permission to request records from that new doctor.

About PicnicHealth
How far back will you collect historical records?

We will collect records going back as far as possible. 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 doctors.

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

You may choose to delete your medical records from the PicnicHealth service at any time and for any reason. Just email PicnicHealth at [email protected]. Once records have been collected for a particular research initiative, you can’t remove them from that research initiative.

Data and Privacy
Will I see the research results?

Yes! We believe it’s important for you to see the results of research produced using your data and we’ll make every effort to share published results back with you.

Study Basics
How will my doctor know it’s okay to share my records?

When you sign up, you’ll read and sign a form that authorizes PicnicHealth to request your medical records on your behalf. You can e-sign this form online—no printing or mailing involved. Your doctor will then know that it's okay to share your medical records with PicnicHealth.

About PicnicHealth
When I first see my PicnicHealth timeline, will it be complete?

When you first see your timeline, it's possible that some of your medical records are not yet available. That's because PicnicHealth is still working hard to collect them for you. You should be able to see your medical records within 3 to 4 weeks of signing up. After the first month, your timeline will be updated regularly with information from your new doctor visits.

What to Expect
Will my medical records be secure?

PicnicHealth takes privacy very seriously. Your personal information is never shared without your explicit permission. Your 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.

Data and Privacy
Can medical records really help with research?

Medical records record what’s actually happening when doctors see patients, so they can be really helpful for understanding how medical care is delivered in the real world. They also contain a lot of information about your experiences—your symptoms, your health status, and your treatments. Putting all of this information together for a diverse group of patients will allow researchers to see patterns that no one doctor can see on his or her own.

Study Basics
What if my doctor doesn’t have electronic records?

No problem. PicnicHealth can work with records in any format, whether your doctor takes notes with a pen or on an iPad.

About PicnicHealth
What should I do if I notice there are medical records missing from my 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.

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. In this research, we are only looking at data from medical records produced during your normal visits to the doctor. The goal is to better understand how patients across the US are being treated and why a disease looks different in different people.

Study Basics
How can I use my PicnicHealth timeline?

Your PicnicHealth timeline provides a single source of information for you and your doctors. It is a tool to help you coordinate care and understand your own health. You can share your timeline with any of your doctors with a few clicks. The doctor will receive a secure link and get access to your medical history.

About PicnicHealth
What kinds of medical records will 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
Who is sponsoring the study? Are there any third parties involved?

The research is directly sponsored by PicnicHealth. At PicnicHealth, we specialize in building de-identified medical record data sets for researchers. Our goal is to get this data into the hands of researchers who can analyze the data to answer research questions about how diseases look and are treated out in the real world (not in a very controlled clinical trial setting) with the hope that this can ultimately lead to better care. Third party organizations can apply for access to the de-identified data. These might be government, academic, or commercial innovators. As with all PicnicHealth research, access to the data will be free to all academic researchers.

Study Basics
Will PicnicHealth cost me anything?

You’ll receive PicnicHealth’s service free of charge for the duration of the study as long as you’re a participant.

About PicnicHealth
Will I get records from my scans and imaging?

Yes! You will be able to view your imaging files right in your PicnicHealth timeline.

What to Expect
Will PicnicHealth update my medical records every time I see the doctor?

PicnicHealth will update your medical records regularly. To keep your records most up-to-date, you can always tell PicnicHealth when you have seen the doctor. Just click the “Request Records” button at the top of your timeline, and PicnicHealth will retrieve your new records for you.

What to Expect
What should I do if I see a new doctor?

At the top of your timeline, click on "Doctors" to add new doctors or medical facilities. PicnicHealth will then collect your records from your new doctors.

What to Expect
Can I stop participating in this research?

Yes. Your participation in this research is completely voluntary and you can withdraw at any time. If you choose to stop participating, your medical records will remain available for you through your PicnicHealth account. At that time we will stop collecting any new medical records. You can download copies of your records at any time. You can always tell PicnicHealth to delete your medical records, although the information that has already been shared with third party partners can’t be deleted.

What to Expect

Share your loved one's story to change the future of FSGS

Join Now
Have questions about how it works or PicnicHealth?
Email us at [email protected].