You or your child could be the key to the next Duchenne or Becker Muscular Dystrophy breakthrough.

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.

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.

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.

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.

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.

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.

Yes. You can view this sample timeline.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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

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

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.

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.

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.

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.