Erythropoietic Protoporphyrias: Studies of the Natural History, Genotype-Phenotype Correlations, and Psychosocial Impact

CompletedOBSERVATIONAL
Enrollment

150

Participants

Timeline

Start Date

July 31, 2012

Primary Completion Date

July 1, 2019

Study Completion Date

July 1, 2019

Conditions
Erythropoietic ProtoporphyriaEPPX-Linked ProtoporphyriaXLPXLPPX-Linked Dominant Erythropoietic ProtoporphyriaXLEPPXLDP
Trial Locations (6)

10029

Icahn School of Medicine at Mount Sinai, New York

27106

Wake Forest University Health Sciences, Winston-Salem

77555

University of Texas Medical Branch, Galveston

84132

University of Utah, Salt Lake City

94143

University of California, San Francisco, San Francisco

35294-0012

University of Alabama, Birmingham, Birmingham

All Listed Sponsors
collaborator

Rare Diseases Clinical Research Network

NETWORK

collaborator

Office of Rare Diseases (ORD)

NIH

collaborator

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

NIH

lead

Icahn School of Medicine at Mount Sinai

OTHER

NCT01688895 - Erythropoietic Protoporphyrias: Studies of the Natural History, Genotype-Phenotype Correlations, and Psychosocial Impact | Biotech Hunter | Biotech Hunter