Shape the future of TARPEYO® (budesonide) delayed release capsules

This study is open to adults and children taking TARPEYO® (budesonide) delayed release capsules.

PicnicHealth is a leading health technology company simplifying healthcare for everyone. Through a combination of clinical expertise and technology, PicnicHealth provides patients with their organized medical records to prepare for doctor visits and advocate for themselves. Patients can also more easily participate in observational research to advance medicine and enrich lives.

The PERFORM Patient Registry Team has engaged PicnicHealth to help researchers collect and manage medical records in order to learn more about how TARPEYO impacts adults in the real world. When you sign up for the PicnicHealth application, PicnicHealth will do all the work of collecting, digitizing, and organizing your medical records, regardless of where you have received care. No effort is required on your part to obtain your medical records.

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You will then get access to a secure online platform for you to view and share your organized records. To protect your privacy, information that directly identifies you will be removed, and a unique code will be assigned to your medical records (de-identified) before sharing with the PERFORM Patient Registry Team for the purpose of this study. The information gathered from patient medical records is helpful for researchers to understand real-world care patterns and short- and long-term health outcomes.

We’ll start by searching for any of your records through our connected network. If necessary, direct requests can also be sent to your healthcare providers. Electronic records can be available within an hour, while records from individual providers may take a couple of weeks.

The PERFORM Patient Registry Team is the research sponsor. The PERFORM Team has engaged PicnicHealth, a digital health company, to help securely collect and manage study participants’ medical records for the purpose of this study.

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 The PERFORM Patient Registry Team. 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 the PicnicHealth timeline.

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

PANTHERx Specialty Pharmacy has partnered with the PERFORM Patient Registry Team and PicnicHealth to share this research opportunity with patients who are currently taking or have taken TARPEYO (budesonide).

PicnicHealth follows HIPAA-compliant practices and uses advanced end-to-end encryption and security measures, the same technology banks use to keep information secure. Your records are only shared with your permission.

This is not a clinical trial. A traditional clinical trial involves testing a specific treatment, like a drug or medical device. The PERFORM Patient Registry Team will only review data from medical records produced during your visits to the doctor – in other words, there are no additional labs, tests, or appointments required for you to participate. You will also be asked to complete optional, short, online paid surveys.

No, there is no cost to participate as you’ll receive PicnicHealth’s service free of charge as part of your participation in the PERFORM Patient Registry. If you would like to continue to have PicnicHealth collect your medical records, you may enroll in the service as a customer at the end of PERFORM Patient Registry.

Yes, you can withdraw your consent at any time. When you withdraw your consent, PicnicHealth will stop collecting records. However, any data that has already been shared with PERFORM Patient Registry researchers, up until the time you notify PicnicHealth to stop participating in research, cannot be changed or deleted.

For more details or assistance regarding the PicnicHealth platform and medical record services, visit our website or reach out to the PicnicHealth team at [email protected].