New registry tracks heart Drug's Long-Term safety in rare genetic disorder
NCT ID NCT02135705
First seen May 21, 2026 · Last updated May 23, 2026 · Updated 1 time
Summary
This study is a long-term registry that follows 260 patients with a rare genetic condition causing extremely high cholesterol (homozygous familial hypercholesterolemia) who are taking the drug lomitapide. The goal is to monitor safety over time, especially liver problems, stomach issues, and tumor risk. Participants are already using lomitapide as part of their regular care, and the study collects data to better understand the drug's long-term effects.
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This is a summary of
the original study
.
Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Contacts and locations
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Locations
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201 Route 17 North
Rutherford, New Jersey, 07070, United States
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317 Saint Francis Dr.
Greenville, South Carolina, 29601, United States
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ASST Grande Ospedale Metropolitano Niguarda
Milan, MI, 20162, Italy
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Alfieri Cardiology
Newark, Delaware, 19713, United States
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Arkansas Heart Center
Fort Smith, Arkansas, 72901, United States
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Ascension
Milwaukee, Wisconsin, 53211, United States
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Aspirus Research Institute
Wausau, Wisconsin, 54401, United States
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Atlanta Heart Specialists
Cumming, Georgia, 30041, United States
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Azienda Ospedaliera G. Brotzu
Cagliari, CA, 09134, Italy
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Azienda Ospedaliera Specialistica Dei Colli
Naples, 80131, Italy
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Azienda Ospedaliera Universita di Padova
Padova, PD, 35128, Italy
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Azienda Ospedaliera Universitaria Federico II
Naples, 80131, Italy
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Azienda Ospedaliera Universitaria Policlinico Paolo Giaccone
Palermo, PA, 90127, Italy
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Azienda Ospedaliero Universi consorziale policlinico di Bari
Bari, Bari, 70120, Italy
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Azienda Ospedaliero-Universitaria San Luigi Gonzaga
Orbassano, TO, 10043, Italy
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Baylor Scott & White Health
Dallas, Texas, 75226, United States
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Brookwood Baptist Medical Center
Birmingham, Alabama, 35209, United States
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CNR Regione Toscana - Fondazione Toscana Gabriele Monasterio
Pisa, Pisa, 56124, Italy
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Cardiology Consultants of Philadelphia
Philadelphia, Pennsylvania, 19107, United States
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Cardiology Specialists Of Carolina
Charlotte, North Carolina, 28211, United States
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Cardiology Specialists of the Carolinas PA
Charlotte, North Carolina, 28204, United States
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Cardiovascular Institute of the South
Houma, Louisiana, 70360, United States
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Cardiovascular Specialists of Texas
Austin, Texas, 78758, United States
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Cedars-Sinai Medical Center
Los Angeles, California, 90048, United States
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Centre Hospitalier Régional Universitaire de Lille
Lille, Cedex, 59037, France
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Centre Hospitalier Universitaire Lyon
Bron, Lyon, 69677, France
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Centre Hospitalier Universitaire Strasbourg
Strasbourg, 67000, France
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Clinica de Salud de Chaco
Reconquista, Chaco CPA, H3500BJS, Argentina
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Community Health Network
Indianapolis, Indiana, 46250, United States
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Complete Family Care Cholesterol Treatment Center
Sterling Heights, Michigan, 48314, United States
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Comprehensive Cardiovascular Care
Gurnee, Illinois, 60031, United States
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Ecogene-21
Chicoutimi, Quebec, G7H7K9, Canada
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Erasmus Medisch Centrum
Rotterdam, South Holland, 3015 GD, Netherlands
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Florida Lipid Institute
Winter Park, Florida, 32792-2223, United States
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Get Well Immediate Care
Towson, Maryland, 21204, United States
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HealthEast Care System
Saint Paul, Minnesota, 55102, United States
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Henry County Medical Center
New Castle, Kentucky, 40050, United States
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Imperial College Healthcare - NHS Trust
London, London, W12 0NN, United Kingdom
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Lehigh Valley Hospital And Health Network
East Stroudsburg, Pennsylvania, 18301, United States
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McGill University
Montreal, Quebec, H4A3J1, Canada
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Medical College of Wisconsin
Milwaukee, Wisconsin, 53226, United States
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Methodist Physicians Clinic
Omaha, Nebraska, 68114, United States
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Metropolitan Hospital
Piraeus, Piraeus, 18547, Greece
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Minneapolis Heart Institute Foundation
Minneapolis, Minnesota, 55407, United States
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Murray Hill Medical Group
New York, New York, 10016, United States
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NY Heart Center
Syracuse, New York, 13210, United States
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Northern Arizona Healthcare
Cottonwood, Arizona, 86326, United States
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Northside Hospital, Inc.
Cumming, Georgia, 30041, United States
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Nova Scotia Health Authority
Halifax, Nova Scotia, B3H2Y9, Canada
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Palmetto Health
Columbia, South Carolina, 29203, United States
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Pediatric Cardiology Associates
Syracuse, New York, 13210, United States
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Piedmont Heart Institute
Atlanta, Georgia, 30309, United States
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Pima Heart
Tucson, Arizona, 85718, United States
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Policlinico S. Orsola-Malpighi
Bologna, BO, 40138, Italy
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Preventative Cardiology, Inc.
Boca Raton, Florida, 33434, United States
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Radboud Universiteit Medisch Centrum
Nijmegen, Gelderland, 6525 GA, Netherlands
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Robarts Research Institute
London, Ontario, N6A5B7, Canada
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Scottsdale Family Health
Phoenix, Arizona, 85018, United States
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Springhill Physician Practices
Mobile, Alabama, 36608, United States
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St. Luke's University Health Network - Pennsylvania
Bethlehem, Pennsylvania, 18015, United States
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St. Vincent Medical Group, Inc.
Indianapolis, Indiana, 46290, United States
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Stern Cardiovascular Foundation
Southaven, Mississippi, 38671, United States
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The Heart Care Group, PC
Allentown, Pennsylvania, 18103, United States
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The University of Vermont Health Network
Burlington, Vermont, 05401-1473, United States
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Thomas Jefferson University Health System
Philadelphia, Pennsylvania, 19148, United States
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University General Hospital of Ioannina
Ioannina, 45500, Greece
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University of Colorado Health
Aurora, Colorado, 80045, United States
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Università degli Studi di Roma La Sapienza
Roma, RM, 00161, Italy
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Università degli Studi di Roma La Sapienza
Roma, Rome, 00161, Italy
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Valley Medical Group
Wyckoff, New Jersey, 07481, United States
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West Virginia University Medicine
Morgantown, West Virginia, 26506, United States
Conditions
Explore the condition pages connected to this study.