PKUDOS: Phenylketonuria (PKU) Demographic, Outcomes, and Safety Registry

CompletedOBSERVATIONAL
Enrollment

1,887

Participants

Timeline

Start Date

September 30, 2008

Primary Completion Date

January 29, 2021

Study Completion Date

January 29, 2021

Conditions
PhenylketonuriaHyperphenylalaninaemia
Interventions
DRUG

Kuvan

-Recommended post-partum Assessments include: collection of baby's plasma at Birth, 1 Month and 6 months, and collection of mother's plasma and expressed breast milk sample at 1 Month.

Trial Locations (45)

10595

Westchester Medical Center, Valhalla

12208

Albany Medical Center, Albany

14642

University of Rochester Medical Center, Rochester

15224

Children's Hospital of Pittsburgh, Pittsburgh

17033

Penn State, Milton S. Hershey Medical Center, Hershey

19104

Children's Hospital of Philadelphia, Philadelphia

19134

St. Christophers Hospital for Children, Philadelphia

20010

Children's National Medical Center, Washington D.C.

21287

Johns Hopkins University School of Medicine, Baltimore

23507

Children's Hospital of the King's Daughters, Norfolk

26506

West Virginia Genetics Center, Department of Pediatrics, Morgantown

27599

University of North Carolina, Chapel Hill

29646

Greenwood Genetic Center, Greenwood

30033

Emory University, Decatur

32611

University of Florida, Gainesville

33136

University of Miami, Miller School of Medicine, Department of Human Genetics, Miami

33606

University of South Florida, Tampa

33607

Tampa Children's Hospital, St. Joseph's Pediatric Endocrine Associates, Tampa

40202

Kosair Charities Pediatric Clinical Research Unit, Louisville

40536

University of Kentucky, Lexington

43205

Nationwide Children's Hospital, Columbus

44308

Akron Children's Hospital, Akron

46202

Indiana University School of Medicine, Indianapolis

52242

University of Iowa, Iowa City

53226

Children's Hospital of Wisconsin, Milwaukee

55455

University of Minnesota, Minneapolis

57117

Sanford Children's Specialty Clinic, Sioux Falls

60611

Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago

63110

St. Louis Children's Hospital, St Louis

65212

University of Missouri Health Care, Columbia

67208

Wesley Pediatric Faculty Clinic, Wichita

68182

University of Nebraska, Omaha

70112

Tulane University Medical School, New Orleans

73104

University of Oklahoma, Oklahoma City

80045

Children's Hospital, University of Colorado School of Medicine, Aurora

84132

University of Utah, Salt Lake City

90027

Childrens Hospital of Los Angeles, Los Angeles

90033

LAC and USC Medical Center, Los Angeles

90095

UCLA, Los Angeles

92093

University of California, San Diego, San Diego

92868

Children's Hospital of Orange County, Orange

94305

Stanford University, Pediatrics, Stanford

97239

Oregon Health and Science University, Portland

02115

Children's Hosptial of Boston, Boston

07960

AHS Hospital Corp, Morristown

Sponsors
All Listed Sponsors
lead

BioMarin Pharmaceutical

INDUSTRY