Information for Patients

Why should patients join THRIVE?

UCDs are a rare group of disorders affecting both children and adults about which there has not been much information. In the past few years, there has been an increase in research on UCDs, including studies like THRIVE. By allowing their information to be collected in the study, patients may help doctors and researchers better understand how different treatments affect individuals with UCDs, and help doctors take care of patients with UCDs in the future.

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What will patients be asked to do?

If a patient chooses to participate in THRIVE, the patient will see the doctor as usual. The doctor will collect information about the patient’s treatment and send it to the THRIVE Team for the 10 year duration of the study. The study will not require any additional doctor’s visits or tests, and patients will be able to continue with current medicine and treatment plans.

Patients will also be asked to complete periodic surveys. Completing these surveys is optional and will not impact their treatment or their ability to participate in THRIVE. If the patient chooses to complete the surveys they can choose to complete them at home or when they see their physicians.

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Will patient privacy be protected?

Doctors who participate in THRIVE, their staff, and Horizon Pharma, the company sponsoring the study, respect all patients’ privacy. If you decide to participate you will be asked to complete a HIPAA authorization form which will describe how your information will be used.

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Can patients stop participation?

Patients are asked to participate in THRIVE for 10 years. If a patient signs up and later decides not to continue, the patient may stop at any time. Simply tell the study doctor. The patient’s information will be collected and used up to the point at which he/she decides to not participate.

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What is an Informed Consent Form?

The Informed Consent and Assent Forms describe the study and any potential risks or benefits to the patient. If the patient is under the age of 18, the patient’s parent or legal guardian will sign the Informed Consent Form and the minor can sign an Informed Assent Form. Signing these forms says that the patient understands what THRIVE is and wants to participate in the study. It says that the patient has been able to ask questions about anything he/she does not understand. It also includes notification of your rights under the Health Insurance Portability and Accountability Act (HIPAA). The doctor should provide a copy of these documents after signature.

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Talk to your doctor to learn more about THRIVE.

What if my doctor is not participating in THRIVE or does not want to participate?

You can still participate in THRIVE even if your doctor does not wish to participate in THRIVE with you. The THRIVE Team can help you participate in the study directly. Just contact the THRIVE Team at 855-UCD-2595 for details.

Download a free patient pamphlet about the registry

More Information for Healthcare Providers