Frequently Asked Questions
What is the SarChart study?

The SarChart study is a medical chart review study being conducted by Sarepta in partnership with PicnicHealth to understand the diagnostic journey, treatment and progression of limb girdle muscular dystrophy subtypes LGMD2E/R4 (beta-sarcoglycanopathy), LGMD2D/R3 (alpha-sarcoglycanopathy), and LGMD2C/R5 (gamma-sarcoglycanopathy). The sarcoglycanopathy subtypes have a similar disease progression, therefore we are interested in learning about these three subtypes together in this SarChart review study.

About SarChart
What does PicnicHealth do?

PicnicHealth works directly with people like you to help collect and manage your medical records. When you consent to participating in a PicnicHealth study, you are giving PicnicHealth permission to do all the work of collecting, organizing, and updating all of your medical records from your different doctors on your behalf. PicnicHealth will then transform those records into a digital Timeline that makes it easier to find what you’re looking for. When you see the doctor again, PicnicHealth will update your Timeline with new records. You can access the PicnicHealth Timeline from anywhere you have internet access and securely share it with your doctors, care team, and family members with a few clicks.

About PicnicHealth
Can medical records really help with research?

Medical records document what’s actually happening when doctors see patients, so they can be really helpful for understanding how care is delivered. They also contain a lot of information about your LGMD – your symptoms, health status, and disease management. Putting all of this information together from a diverse group of participants may allow the scientific community to see patterns that no one doctor can see on their own, enabling the community to better support individuals living with an LGMD.

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

PicnicHealth will never share your records without your explicit consent. By signing up for this study, you're agreeing to share your de-identified data with PicnicHealth-vetted LGMD research partners. Outside of that, no one will be able to see your medical records unless you choose to share them by clicking "Share Records" at the top of the PicnicHealth Timeline.

You will be the only person who can access your medical records on PicnicHealth. No one — including your doctor or insurance company — will be able to see your medical records unless you choose to share them by clicking "Share Records" at the top of the PicnicHealth Timeline.

Data and Privacy
What is a medical chart review? Why is it important?

A medical chart review study, like SarChart, is a type of research where doctors and researchers look at medical records to understand more about certain health conditions.  In this case, they're focusing on Limb-Girdle Muscular Dystrophies (LGMDs), specifically types LGMD2E/R4, LGMD2D/R3, and LGMD2C/R5.

In this type of study, there is no need for any new treatments or medicines.  Instead, researchers study the information already in your medical records, like doctor’s notes and test results. The goal of a medical chart review study is to collect clear and detailed information about how people with these conditions live and manage their health over time. This includes understanding how quickly or slowly the condition progresses and any other health issues that might come up along the way.

By looking at real-life experiences, doctors and researchers can learn a lot about a condition. This may help them figure out better ways to diagnose and manage it, especially for rare conditions like LGMDs. Every piece of information may help to build a bigger picture, providing more information to healthcare professionals to help them support their patients.

About SarChart
I already use a different electronic medical record (EMR) system, how is the PIcnicHealth Timeline different?

PicnicHealth is a patient-centric platform built to help alleviate the stress of organizing complex medical care.

PicnicHealth gathers and organizes medical records, including paper-based records, doctor’s notes, labs, imaging, and trends from all of your providers and sites of care regardless of health system affiliation. The Timeline allows you to securely share your medical record information with your care team and/or family members in an organized streamlined application.

Most EMR systems, conversely, are typically health system-specific and only aggregate your information from one facility or facilities within the same health system. The features enabled in your EMR system vary by facility and typically do not include features like imaging and lab trends across health systems over time.

Lastly, PicnicHealth enables patients to contribute their healthcare journey to leading medical researchers, while other EMR systems are primarily a patient engagement application and do not have a feature that allows you to contribute to research.

About PicnicHealth
Will my medical records be secure?

PicnicHealth takes privacy very seriously. 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.

What to Expect
How long will it take to get my medical records?

It takes about 4 to 6 weeks to retrieve most historical medical records. The timing mainly depends on how quickly your doctors respond to PicnicHealth's requests for records.

Data and Privacy
Who can sign up for the SarChart study?

You are eligible for SarChart if you have been diagnosed with LGMD2E/R4 (beta-sarcoglycanopathy), LGMD2D/R3 (alpha-sarcoglycanopathy), or LGMD2C/R5 (gamma-sarcoglycanopathy), and receive medical care in the United States.

About SarChart
Will PicnicHealth cost me anything?

No, there is no cost to participate. You’ll receive PicnicHealth’s service free of charge as part of your ongoing participation in Sarepta’s SarChart study. If you would like to continue to have PicnicHealth collect your records, you may enroll in the service as a customer once the study is complete.

About PicnicHealth
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 health. You can share the Timeline with any of your doctors, family members, or care team with a few clicks. That person will receive a secure link and get access to your medical history. You also have the ability to also discontinue or pause their access.

What to Expect
How far back will you collect historical records?

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 PicnicHealth can go really depends on the record-keeping practices of your doctors.

Data and Privacy
What if I’m a part of the JOURNEY natural history study?

Unfortunately, if you are a part of the Sarepta JOURNEY natural history study, you are not eligible to participate in this study. If you are a part of another natural history study (not conducted by Sarepta), or another study conducted by Sarepta, you are eligible to participate in this study.

About SarChart
What kinds of medical records do 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
Can I withdraw from SarChart after I’ve signed up?

Yes. Your participation in any study 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 may choose to delete your medical records from the PicnicHealth service at any time and for any reason. Just email PicnicHealth at [email protected]. However, any data that has already been shared with a research partner, up until the time you notify PicnicHealth to stop participating in research, cannot be changed or deleted.

Data and Privacy
What’s required of me if I’m eligible for SarChart?

If you qualify for SarChart, joining involves a few straightforward steps. Firstly, it’s all about consent – your permission is needed for PicnicHealth to access and review your medical charts. This is because your privacy and the confidentiality of your health information are top priorities. If you decide to participate and give your consent, PicnicHealth will handle collection of all the necessary medical records, making the process as smooth as possible for you.

You might also have the chance to fill out brief surveys that give insights into your health and how you go about your daily life. These surveys are designed to take about 10 to 15 minutes of your time, and as a thank you, you'll receive $40 compensation in the form of an electronic VISA gift card for helping out.

It’s important to know that SarChart is a non-interventional study. This means you won't have to take any new medications or change any part of your current disease management. Your participation is solely for the purpose of understanding health conditions better through the information in medical records. Please note your participation will have no impact on current or future clinical trial eligibility.

About SarChart
Can I see what my records will look like in my PicnicHealth account?

Yes. You can view the sample Timeline here.

What to Expect
If I involve myself in this project does it increase my chances of getting into a clinical trial in the future or receiving access to approved medicines?

Thank you for the question. Your involvement in this will not impact your ability to enroll in a potential clinical trial. If you do or do not engage in this work, it will not influence the opportunities to be in a clinical trial.

About SarChart
What if I can't remember the names of all my doctors?

That's ok. 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 records who you did not include on your list, you will get an email asking for your permission to request records from that new doctor.

What to Expect
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. If you suspect that any information on your Timeline is incorrect, please contact us at [email protected].

What to Expect
Join Now

Your lived experience with Limb-Girdle Muscular Dystrophy could provide key insights into future research

We know that Limb-Girdle Muscular Dystrophy (LGMD) can impact a person in a variety of ways. That is why we’ve decided to launch a patient-powered observational study designed to create a holistic picture of the LGMD journey – including quality of life and care.

Learn More
Study Eligibility: This study is open to those living with LGMD subtypes 2E (LGMD2E/R4), 2D (LGMD2E/R3) and 2C (LGMD2C/R5) who receive medical care in the US. You do not need to be on any treatment(s) in order to participate.

What is SarChart?

This study is designed to deepen understanding of Limb-Girdle Muscular Dystrophy. By analyzing de-identified medical records, researchers can better understand what life looks like for those impacted by LGMD, including how challenges with breathing, walking, and chronic conditions involving the heart are managed and progress in the real world. There are no additional appointments, labwork, or tests required to participate in this study. Everything can be completed from the comfort of your home, and to show our appreciation for your input, participants will receive compensation for completing health surveys.

Join Now
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Tell Us About Your Care

Help us understand your health by confirming your diagnosis, and providing the names of a few of your healthcare providers. Sit back and relax while PicnicHealth handles all the paperwork and phone calls to collect and compile your complete health history– including paper-based records, imaging, and doctor’s notes. All this information will be securely transferred to a private portal, which only you can access.

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Building a comprehensive Timeline of your health

Once all the information is collected, it’s transformed into a digital Timeline, offered free to SarChart study participants. The Timeline is a powerful tool that gives you control and instant access to your complete medical records.
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You can securely share access to their records whenever you need to, ensuring the right people have the right information. Plus, we’ll keep it updated regularly.

Explore a Sample Timeline

Protecting Your Privacy

We take privacy seriously. When your health data is gathered, we make sure to strip away any personal details that could identify you, using a process called de-identification. This way researchers get the valuable health information they need, without any of the private information they don’t.  

Your de-identified data will only be shared with study researchers. You can learn more about this in our terms and conditions.

Share Your Voice And Get Compensated

By joining SarChart you will have the opportunity to complete (10-15 minutes long) surveys 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 health that may not be captured in medical records.

Still have questions?

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