Saves the questions and what to expect into your notes, next to the visit they belong to.
Keep this study
Lead
BioMarin Pharmaceutical
The PKUDOS program is a voluntary, multicenter, strictly observational program for patients with PKU who have either received Kuvan therapy, or currently receive Kuvan, or intend to begin receiving Kuvan therapy within 90 days of entering the registry.
Age
Any age
Sex
ALL
Healthy volunteers
Not accepted
You may be eligible if
PKUDOS Registry
Patient has confirmed diagnosis of PKU with hyperphenylalaninemia documented by a Phenylalanine level of greater than or equal to 360 umol/L (6 mg/dL)
Patient has previously received Kuvan
Patient is currently receiving Kuvan
Patient intends to receive Kuvan therapy within 90 days of enrollment into the registry
The Patient is being followed at a PKUDOS participating center
Willing and able to provide written authorization or, if under the age of 18 years, provide written assent (if required) and written patient authorization by a parent or legal guardian
Willing to provide personal health information
Willing to enroll in (or are already enrolled in) PKUDOS
Agree to follow the standard of care for pregnant women with PKU in the United States (NIH, 200, NIH Consensus Statement)
Agree to be followed by a hospital or PKU clinic offering the standard of care for maternal PKU
Are within 10 weeks of their last menstrual period
You may not be if
Patients not previously treated with Kuvan and patients that are unwilling to begin Kuvan therapy within 90 days of entry into the registry
PKU MOMS Subregistry
Clareo Health | PKUDOS: Phenylketonuria (PKU) Demographic, Outcomes, and Safety Registry
