PicnicHealth works directly with patients 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.

It takes about 4 weeks to retrieve most of your historical medical records. After that, it can take another couple of months for us to track down the oldest and trickiest records to access.  The timing depends on how quickly your doctors respond to PicnicHealth's requests for your records.

You can join this study if you (or your child) have been diagnosed with long-chain fatty acid oxidation disorders (LC-FAOD), live in the U.S., and have received medical care in the U.S. in the past 7 years. People of all ages can join, with caregivers able to enroll participants under the age of 18, with additional assent required for participants 7 to 17 years old. All types of LC-FAOD can join, including:

-CPT I (carnitine palmitoyltransferase I) deficiency

-CACT (carnitine-acylcarnitine translocase) deficiency

-CPT II (carnitine palmitoyltransferase II) deficiency

-VLCAD (very long-chain acyl-CoA dehydrogenase) deficiency

-TFP (trifunctional protein) deficiency

-LCHAD (long-chain 3-hydroxy-acyl-CoA dehydrogenase) deficiency

By signing up for this study, you're agreeing to share your medical records with researchers and organizations working in the LC-FAOD space. They will only receive records stripped of any information that could be used to identify you personally. Outside of that, no one 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.

Yes. You can view this sample timeline.

For this research study, 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.

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The goal of LC-FAOD Odyssey is to advance the understanding of LC-FAOD and to support research to improve quality of care. Information from medical records is particularly useful for diseases, such as LC-FAOD, because it gives us insight into disease progression and how treatment options may work in the real world, while being able to participate from home. Some LC-FAOD research objectives that your health information can help answer include understanding:

-The frequency and impact of metabolic crises, such as hospitalizations

-The extent and impact of avoiding everyday activities, including physical activities

-The emotional and social toll managing the disease can take (for patients & caregivers)

-Symptoms, health complications, and other disease-related conditions

-Disease progression

-Treatment patterns and their effectiveness

-Differences in outcomes by LC-FAOD type

PicnicHealth will always protect your rights and privacy. We de-identify your data before sharing it with researchers, stripping away personally identifiable information. This includes, but is not limited to, your name, email, date of birth, phone number, address, and the names of your doctors.

You may choose to delete your medical records and data from the PicnicHealth service at any time and for any reason. Just email PicnicHealth at [email protected].  This will not affect data that has been stripped of your name and other similar personally identifying information and already shared for research purposes.

You can enter all your doctors, including primary care physician or pediatrician, metabolic specialist, geneticist, cardiologist, neurologist, endocrinologist, ophthalmologist, and more. In addition, you can enter other allied healthcare professionals that help manage LC-FAOD, including dietitians and physical therapists.

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 a month of signing up. After the first month, your timeline will be updated regularly with information from your new doctor visits.

Yes! We believe it’s important for you to see the results of research produced using your data and we are committed to sharing published results (e.g., research publications, conference abstracts) with you. PicnicHealth will email you regarding any important updates to the study including new insights you have helped power. Research takes time, so we appreciate your patience while scientists and clinicians are working on learning new things about LC-FAOD.

PicnicHealth takes privacy very seriously. Your personal data 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.

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PicnicHealth and Ultragenyx are separate companies that are partnering for this study. PicnicHealth is a digital health company that helps patients collect and manage their medical records which can be used to support research. Ultragenyx is a biopharmaceutical company that does scientific research to develop new treatments for a range of rare medical conditions, including LC-FAOD.

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.

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In the first months, 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.

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The study 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 LC-FAOD looks and is 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
studies, access to the data will be free to all academic researchers.

Medical records tell a story of what’s actually happening when doctors see patients and can be really helpful for understanding how care is delivered in the real world. They also contain a lot of information about how you experience LC-FAOD; your symptoms, your health status, and how you manage and treat LC-FAOD. Putting all of this information together will allow the scientific community to see patterns that no one healthcare provider can see on his or her own. This is particularly insightful for rare diseases, where there is typically little known about the disease.

Researchers interested in studying LC-FAOD using the de-identified data collected can contact PicnicHealth at [email protected]. Researchers will be asked to submit an application which outlines their research study rationale, goals, and analysis approach. Applications require background information including personnel involved, relevant credentials, associated institutions, and any conflicts of interest. PicnicHealth then follows a process to evaluate potential partners based on the validity of the research questions and commitment to advance science for the public good.

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.

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

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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.

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As part of this study you will be asked to answer multiple choice questionnaires to better understand how you’re feeling, your current treatment, and your experiences with managing LC-FAOD. Questionnaires are important as they can collect information that does not exist in medical records. Your responses can help researchers at Ultragenyx better understand the condition and the benefits of different management approaches. You may be asked to complete a questionnaire up to four times a year, and each questionnaire is expected to take approximately 10 minutes. No personally identifiable information will be collected or shared as part of the questionnaires.

Yes, you can be compensated up to $150.00 in the first year via Visa gift card. Once you sign up online and complete an initial survey, which should take less than 20 minutes, you will receive a $50.00 reward from PicnicHealth once it is confirmed you qualify for the study. After this, you will be invited to complete a survey about your experiences quarterly. Completing these subsequent surveys will entitle you to an additional reward of $25.00 each, meaning you can be compensated up to $150.00 total for the first year. After completing each questionnaire, you should receive the gift card within 5 to 10 business days.

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

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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. This can make it easier when you meet a new member of your care team - who likely doesn't know a lot about your LC-FAOD. You can provide them all of your background more easily.

This is an observational study, not a clinical trial. A clinical trial involves testing a specific treatment, like a drug or medical device. In this study, we are looking at data from medical records produced during your normal visits to your healthcare providers and your responses to questionnaires about your care experiences. The goal is to better understand how LC-FAOD are diagnosed, managed and treated, and what other conditions individuals diagnosed with LC-FAOD may experience in order to advance researchers’ understanding of LC-FAOD and hopefully improve future care for people living with LC-FAOD.

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.

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

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Yes. Your participation in this 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 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.