Why join?

Get your or your child's records, share with science

Your or your child's health in your hands.

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

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

Share records seamlessly.

Coordinate your or your child's 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 hyperlink.
  • Set custom security measures to share your records securely.
  • Pause or remove access any time.
  • Provide CureDuchenne Link with a holistic view of the impact of DMD/BMD

How it works

1.  Sign up in minutes

Answer a few questions about you or you child's medical care and which doctors you've seen.

2. We gather your or your child's records

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

3. Manage your or your child's health

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

4. Accelerate research with CureDuchenne Link

Your or your child's records are  de-identified, then analyzed to provide vital resources to accelerate discovery and bring treatments faster.

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 or your child's personal information with military grade encryption and abide by HIPAA compliant practices.

Privacy

All data is de-identified. Each CureDuchenne Link participant is provided a unique ID number at registration. PicnicHealth utilizes this unique ID number to keep data de-identified yet consistent.

Frequently Asked Questions

Who can join CureDuchenne Link?

Anyone who has been diagnosed with or is a carrier of Duchenne or Becker Muscular Dystrophy and is 4 weeks of age or older, and lives in the United States. Please visit CureDuchenne Link for more information and to enroll. Access to PicnicHealth is being provided to CureDuchenne Link participants free of charge.

Study Basics
What does PicnicHealth do?

PicnicHealth works directly with people like you to 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
Why is this study important?

The lack of large-scale, data-integrated Duchenne and Becker registries results in a significant burden for patients, requiring them to seek out participation in studies and support multiple researchers themselves without support. With CureDuchenne Link, we take the burden off of you and your family and coordinate with researchers on your behalf. CureDuchenne Link will serve as a resource for researchers across the world, many of whom don’t have sufficient access to the volume of Duchenne and Becker data and/or biosamples needed to answer their research question. PicnicHealth is a valuable resource for you to take more control of your healthcare while contributing additional data and insights to CureDuchenne’s research efforts.

Study Basics
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 see what my records will look like in my PicnicHealth account?

Yes. You can view this sample timeline.

About PicnicHealth
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?

De-identified research data can be used to contribute to new treatments on the market, however we will not know if your specific participation will be included.

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
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
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
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?

CureDuchenne Link is a natural history study that allows researchers to better understand how DMD/BMD impacts those who are diagnosed over time. This will accelerate research on how to treat and eventually cure Duchenne and Becker Muscular Dystrophy.PicnicHealth centralizes your healthcare records for your visibility and empowerment while providing de-identified data and analysis to CureDuchenne Link about the real-world experiences of those living with Duchenne and Becker Muscular Dystrophy.

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 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
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
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 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 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
If I withdraw from CureDuchenne Link, can I keep my PicnicHealth account?

Yes. If you discontinue participation in CureDuchenne Link, you will retain access to your PicnicHealth account and your medical records collected to the date of your withdrawal; however, ongoing record collection will cease. If you wish to continue ongoing record collection, you have the option of converting your account to a personal PicnicHealth account. Please contact PicnicHealth for details and pricing.

What to Expect

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

For questions about CureDuchenne or CureDuchenne Link, please email [email protected].