Natural History Study of Acute Hepatic Porphyria (AHP) with Recurrent Attacks

ID Number 14-1183

Principal Investigator(s)
Manisha Balwani

Department(s) or Division(s)
Genetics and Genomic Sciences

Research Entity
Porphyria Comprehensive Diagnostic and Treatment Center

Description

The purpose of this study is to gather information on overall experience with Acute Hepatic Porphyria (AHP), how it affects people, and how healthcare providers manage it. Participation is expected to last 6 months for 10 people at this site and 100 in total. Participation in this study will involve a screening visit (medication questions, questionnaires, physical exam), phone calls, and a follow up visit (urine and blood test).



Contact Information
Hetanshi Naik
(212) 241-7699
hetanshi.naik@mssm.edu

Sylvia Xistris
(212) 659-1450
sylvia.xistris@mssm.edu

Recruiting Patients: Yes