Study Design

THRIVE is a non-interventional, multi-center registry to be conducted in patients with urea cycle disorders (UCDs).

As an observational study, THRIVE will not change the patient/healthcare provider relationship, nor influence the healthcare provider’s drug prescription or the therapeutic management of the patient. THRIVE is designed to permit all interested physician providers to participate as Investigators, and all interested patients with UCDs to participate. Healthcare providers will prescribe treatments based on usual clinical practice, and there will be no restrictions on the use of commercially available medications.

500 patients with UCD will be enrolled in THRIVE. Patients will be assessed at a baseline visit and followed for up to 10 years. Patients and healthcare providers will be asked to report episodes of hyperammonemic crisis, available ammonia levels, and other information.

How do I enroll one of my patients in THRIVE?

A patient must have a confirmed or suspected diagnosis of a UCD to be eligible for participation in the registry and informed consent will be collected from each patient. (THRIVE Investigators should always refer to the Protocol for complete inclusion/exclusion criteria.)

Please log in to the THRIVE EDC and complete the necessary forms to enroll an eligible patient.

If you are NOT already a THRIVE Investigator and you think one of your patients may be eligible to participate, contact the THRIVE team at 855-UCD-2595 or

If you cannot participate in THRIVE as an Investigator, your patient may still be able to participate directly with the THRIVE Team. Contact the THRIVE Team for more information.

Not a THRIVE Investigator but want to be?

Contact the THRIVE Team at: