Event-free survival of maralixibat-treated patients with Alagille syndrome compared to a real-world cohort from GALA.


Journal

Hepatology (Baltimore, Md.)
ISSN: 1527-3350
Titre abrégé: Hepatology
Pays: United States
ID NLM: 8302946

Informations de publication

Date de publication:
25 Dec 2023
Historique:
received: 09 08 2023
accepted: 18 11 2023
medline: 26 12 2023
pubmed: 26 12 2023
entrez: 26 12 2023
Statut: aheadofprint

Résumé

Alagille syndrome (ALGS) is characterized by chronic cholestasis with associated pruritus and extrahepatic anomalies. Maralixibat, an ileal bile acid transporter inhibitor, is the first-approved pharmacologic therapy for cholestatic pruritus in ALGS. Since long-term placebo-controlled studies are not feasible or ethical in children with rare diseases, a novel approach was taken comparing 6-year outcomes from maralixibat trials with an aligned and harmonized natural history cohort from the Global ALagille Alliance (GALA) study. Maralixibat trials comprise 84 patients with ALGS with≤6 years of treatment. GALA contains retrospective data from 1438 participants. GALA was filtered to align with key maralixibat eligibility criteria, yielding 469 participants. Serum bile acids (sBA) could not be included in the GALA filtering criteria as these are routinely performed in clinical practice. Index time was determined via maximum likelihood estimation in an effort to align the disease severity between the two cohorts with the initiation of maralixibat. Event-free survival (EFS), defined as time to first event of manifestations of portal hypertension (variceal bleeding, ascites requiring therapy), surgical biliary diversion, liver transplant, or death, was analyzed by Cox proportional hazards methods. Sensitivity analyses and adjustments for covariates were applied. Age, total bilirubin (TB), gamma-glutamyl transferase (GGT), and alanine aminotransferase (ALT) were balanced between groups with no statistical differences. EFS in the maralixibat cohort was significantly better than the GALA cohort (hazard ratio 0.305; 95% CI, 0.189-0.491; p<0.0001). Multiple sensitivity and subgroup analyses (including sBA availability) showed similar findings. This study demonstrates a novel application of a robust statistical method to evaluate outcomes in long-term intervention studies where placebo comparisons are not feasible, providing wide application for rare diseases. This comparison with real-world natural history data suggests that maralixibat improves EFS in patients with ALGS.

Sections du résumé

BACKGROUND AND AIMS OBJECTIVE
Alagille syndrome (ALGS) is characterized by chronic cholestasis with associated pruritus and extrahepatic anomalies. Maralixibat, an ileal bile acid transporter inhibitor, is the first-approved pharmacologic therapy for cholestatic pruritus in ALGS. Since long-term placebo-controlled studies are not feasible or ethical in children with rare diseases, a novel approach was taken comparing 6-year outcomes from maralixibat trials with an aligned and harmonized natural history cohort from the Global ALagille Alliance (GALA) study.
APPROACH AND RESULTS RESULTS
Maralixibat trials comprise 84 patients with ALGS with≤6 years of treatment. GALA contains retrospective data from 1438 participants. GALA was filtered to align with key maralixibat eligibility criteria, yielding 469 participants. Serum bile acids (sBA) could not be included in the GALA filtering criteria as these are routinely performed in clinical practice. Index time was determined via maximum likelihood estimation in an effort to align the disease severity between the two cohorts with the initiation of maralixibat. Event-free survival (EFS), defined as time to first event of manifestations of portal hypertension (variceal bleeding, ascites requiring therapy), surgical biliary diversion, liver transplant, or death, was analyzed by Cox proportional hazards methods. Sensitivity analyses and adjustments for covariates were applied. Age, total bilirubin (TB), gamma-glutamyl transferase (GGT), and alanine aminotransferase (ALT) were balanced between groups with no statistical differences. EFS in the maralixibat cohort was significantly better than the GALA cohort (hazard ratio 0.305; 95% CI, 0.189-0.491; p<0.0001). Multiple sensitivity and subgroup analyses (including sBA availability) showed similar findings.
CONCLUSIONS CONCLUSIONS
This study demonstrates a novel application of a robust statistical method to evaluate outcomes in long-term intervention studies where placebo comparisons are not feasible, providing wide application for rare diseases. This comparison with real-world natural history data suggests that maralixibat improves EFS in patients with ALGS.

Identifiants

pubmed: 38146932
doi: 10.1097/HEP.0000000000000727
pii: 01515467-990000000-00695
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Informations de copyright

Copyright © 2023 The Author(s). Published by Wolters Kluwer Health, Inc.

Auteurs

Bettina E Hansen (BE)

Toronto General Hospital University Health Network, Toronto, ON, Canada.
Institute of Health Policy, Management and Evaluation, Toronto, ON, Canada.
Department of Epidemiology, Erasmus MC, Rotterdam, Netherlands.

Shannon M Vandriel (SM)

The Hospital for Sick Children and the University of Toronto, Division of Gastroenterology, Hepatology and Nutrition, Toronto, ON, Canada.

Pamela Vig (P)

Mirum Pharmaceuticals, Inc., Foster City, CA, USA.

Will Garner (W)

Mirum Pharmaceuticals, Inc., Foster City, CA, USA.

Douglas B Mogul (DB)

Mirum Pharmaceuticals, Inc., Foster City, CA, USA.

Kathleen M Loomes (KM)

The Children's Hospital of Philadelphia and the University of Pennsylvania Perelman School of Medicine, Division of Gastroenterology, Hepatology and Nutrition, Philadelphia, PA, USA.

David A Piccoli (DA)

The Children's Hospital of Philadelphia and the University of Pennsylvania Perelman School of Medicine, Division of Gastroenterology, Hepatology and Nutrition, Philadelphia, PA, USA.

Elizabeth B Rand (EB)

The Children's Hospital of Philadelphia and the University of Pennsylvania Perelman School of Medicine, Division of Gastroenterology, Hepatology and Nutrition, Philadelphia, PA, USA.

Irena Jankowska (I)

The Children's Memorial Health Institute, Department of Gastroenterology, Hepatology, Nutrition Disturbances and Pediatrics, Warsaw, Poland.

Piotr Czubkowski (P)

The Children's Memorial Health Institute, Department of Gastroenterology, Hepatology, Nutrition Disturbances and Pediatrics, Warsaw, Poland.

Dorota Gliwicz-Miedzińska (D)

The Children's Memorial Health Institute, Department of Gastroenterology, Hepatology, Nutrition Disturbances and Pediatrics, Warsaw, Poland.

Emmanuel M Gonzales (EM)

Service d'Hépatologie et de Transplantation Hépatique Pédiatriques, Centre de Référence de l'Atrésie des Voies Biliaires et des Cholestases Génétiques (AVB-CG), FSMR FILFOIE, ERN RARE LIVER, Hôpital Bicêtre, AP-HP, Faculté de Médecine Paris-Saclay, Le Kremlin-Bicêtre, and Inserm U1193, Hépatinov, Université Paris-Saclay, Orsay, France.

Emmanuel Jacquemin (E)

Service d'Hépatologie et de Transplantation Hépatique Pédiatriques, Centre de Référence de l'Atrésie des Voies Biliaires et des Cholestases Génétiques (AVB-CG), FSMR FILFOIE, ERN RARE LIVER, Hôpital Bicêtre, AP-HP, Faculté de Médecine Paris-Saclay, Le Kremlin-Bicêtre, and Inserm U1193, Hépatinov, Université Paris-Saclay, Orsay, France.

Jérôme Bouligand (J)

Service de Génétique Moléculaire, Pharmacogénétique et Hormonologie, Hôpitaux Universitaires Paris-Saclay, Assistance PubliqueHôpitaux de Paris, Centre Hospitalier Universitaire de Bicêtre, Le Kremlin-Bicêtre, France.

Lorenzo D'Antiga (L)

Ospedale Papa Giovanni XXIII, Pediatric Hepatology, Gastroenterology and Transplantation, Bergamo, Italy.

Emanuele Nicastro (E)

Ospedale Papa Giovanni XXIII, Pediatric Hepatology, Gastroenterology and Transplantation, Bergamo, Italy.

Henrik Arnell (H)

Astrid Lindgren Children's Hospital, Department of Paediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.

Björn Fischler (B)

Astrid Lindgren Children's Hospital, Department of Paediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and CLINTEC, Karolinska Institutet, Stockholm, Sweden.

Étienne Sokal (É)

Cliniques Universitaires Saint-Luc, Service De Gastroentérologie & Hépatologie Pédiatrique, Brussels, Belgium.

Tanguy Demaret (T)

Cliniques Universitaires Saint-Luc, Service De Gastroentérologie & Hépatologie Pédiatrique, Brussels, Belgium.

Susan Siew (S)

The Children's Hospital at Westmead, Department of Gastroenterology, Sydney, NSW, Australia.

Michael Stormon (M)

The Children's Hospital at Westmead, Department of Gastroenterology, Sydney, NSW, Australia.

Saul J Karpen (SJ)

Children's Healthcare of Atlanta & Emory University School of Medicine, Division of Pediatric Gastroenterology, Hepatology & Nutrition, Atlanta, Georgia.

Rene Romero (R)

Children's Healthcare of Atlanta & Emory University School of Medicine, Division of Pediatric Gastroenterology, Hepatology & Nutrition, Atlanta, Georgia.

Noelle H Ebel (NH)

Division of Gastroenterology, Department of Pediatrics, Stanford University School of Medicine, Palo Alto, CA, USA.

Jeffrey A Feinstein (JA)

Department of Pediatrics (Cardiology), Stanford University School of Medicine, Lucile Packard Children's Hospital, Palo Alto, CA, USA.

Amin J Roberts (AJ)

Starship Child Health, Department of Paediatric Gastroenterology, Auckland, New Zealand.

Helen M Evans (HM)

Starship Child Health, Department of Paediatric Gastroenterology, Auckland, New Zealand.

Shikha S Sundaram (SS)

Section of Gastroenterology, Hepatology and Nutrition, Department of Pediatrics and the Digestive Health Institute, Children's Hospital of Colorado and University of Colorado School of Medicine, Aurora, CO, USA.

Alexander Chaidez (A)

Section of Gastroenterology, Hepatology and Nutrition, Department of Pediatrics and the Digestive Health Institute, Children's Hospital of Colorado and University of Colorado School of Medicine, Aurora, CO, USA.

Winita Hardikar (W)

Royal Children's Hospital, Department of Gastroenterology and Clinical Nutrition, Melbourne, Vic, Australia.

Sahana Shankar (S)

Mazumdar Shaw Medical Center, Narayana Health, Bangalore, India.

Ryan T Fischer (RT)

Children's Mercy Kansas City, Department of Gastroenterology, Section of Hepatology, Kansas City, MO, USA.

Florence Lacaille (F)

Department of Pediatric Gastroenterology, and Nutrition, Necker-Enfants Malades Hospital, University of Paris, Paris, France.

Dominique Debray (D)

Pediatric Liver Unit, National Reference Centre for Rare Pediatric Liver Diseases (Biliary Atresia and Genetic Cholestasis), FILFOIE, ERN RARE LIVER, Necker-Enfants Malades Hospital, University of Paris, Paris, France.

Henry C Lin (HC)

Oregon Health and Science University, Division of Pediatric Gastroenterology, Department of Pediatrics, Portland, OR, USA.

M Kyle Jensen (MK)

University of Utah, Division of Pediatric Gastroenterology, Hepatology and Nutrition, Primary Children's Hospital, Salt Lake City, UT, USA.

Catalina Jaramillo (C)

University of Utah, Division of Pediatric Gastroenterology, Hepatology and Nutrition, Primary Children's Hospital, Salt Lake City, UT, USA.

Palaniswamy Karthikeyan (P)

Leeds Teaching Hospitals NHS Trust, Leeds Children's Hospital, Leeds, UK.

Giuseppe Indolfi (G)

Department Neurofarba, University of Florence and Meyer Children's University Hospital, Paediatric and Liver Unit, Florence, Italy.

Henkjan J Verkade (HJ)

University Medical Center Groningen, Department of Pediatrics, Center for Liver, Digestive, and Metabolic Diseases, Groningen, The Netherlands.

Catherine Larson-Nath (C)

University of Minnesota, Division of Pediatric Gastroenterology, Hepatology, and Nutrition, Minneapolis, MN, USA.

Ruben E Quiros-Tejeira (RE)

Children's Hospital & Medical Center and University of Nebraska Medical Center, Department of Pediatrics, Omaha, NE, USA.

Pamela L Valentino (PL)

Gastroenterology & Hepatology Division, Department of Pediatrics, University of Washington, Seattle Children's Hospital, Seattle, WA, USA.

Maria Rogalidou (M)

Division of Gastroenterology & Hepatology, "Agia Sofia" Children's Hospital, First Department of Pediatrics, University of Athens, Athens, Greece.

Antal Dezsőfi (A)

First Department of Paediatrics, Semmelweis University, Budapest, Hungary.

James E Squires (JE)

University of Pittsburgh School of Medicine, Division of Pediatric Gastroenterology and Hepatology, Department of Pediatrics, Pittsburgh, PA, USA.

Kathleen Schwarz (K)

University of California San Diego, Rady Children's Hospital San Diego, Division of Pediatric Gastroenterology, San Diego, CA, USA.

Pier Luigi Calvo (PL)

Pediatric Gastroenterology Unit, Regina Margherita Children's Hospital, Azienda Ospedaliera-Universitaria Citta' della Salute e della Scienza, Turin, Italy.

Jesus Quintero Bernabeu (JQ)

Hospital Universitari Vall d'Hebron, Pediatric Hepatology and Liver Transplant Department, Barcelona, Spain.
Department of Liver and Gastrointestinal Diseases, Biodonostia Health Research Institute - Donostia University Hospital, University of the Basque Country (UPV/EHU), San Sebastian, Spain.

Andréanne N Zizzo (AN)

Children's Hospital, London Health Sciences Centre, Division of Paediatric Gastroenterology and Hepatology, Western University, London, ON, Canada.

Gabriella Nebbia (G)

Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Servizio di Epatologia Pediatrica, Milan, Italy.

Pinar Bulut (P)

Phoenix Children's Hospital, Division of Pediatric Gastroenterology and Hepatology, Phoenix, AZ, USA.

Ermelinda Santos-Silva (E)

Centro Hospitalar Universitário Do Porto, Pediatric Gastroenterology Unit, Porto, Portugal.

Rima Fawaz (R)

Yale University School of Medicine, Department of Pediatrics, New Haven, CT, USA.

Silvia Nastasio (S)

Boston Children's Hospital and Harvard Medical School, Division of Gastroenterology, Hepatology, & Nutrition, Boston, MA, USA.

Wikrom Karnsakul (W)

Johns Hopkins University School of Medicine, Department of Pediatrics, Baltimore, MD, USA.

María Legarda Tamara (ML)

Paediatric Gastroenterology Unit, Cruces University Hospital, Bilbao, Spain.

Cristina Molera Busoms (CM)

Pediatric Gastroenterology Hepatology and Nutrition Unit, Hospital Sant Joan de Déu, Esplugues de Llobregat, Spain.

Deirdre Kelly (D)

Liver Unit, Birmingham Women's & Children's Hospital NHS Trust and University of Birmingham, Birmingham, UK.

Thomas Damgaard Sandahl (TD)

Department of Hepatology and Gastroenterology, Aarhus University Hospital, Aarhus, Denmark.

Carolina Jimenez-Rivera (C)

Children's Hospital of Eastern Ontario, Division of Gastroenterology, Hepatology and Nutrition, Ottawa, ON, Canada.

Jesus M Banales (JM)

Department of Hepatology and Gastroenterology, Biodonostia Health Research Institute - Donostia University Hospital, Universidad del País Vasco (UPV/EHU), Centro de Investigación Biomédica en Red de Enfermedades Hepáticas y Digestivas (CIBERehd), San Sebastián, Spain.

Quais Mujawar (Q)

University of Manitoba, Section of Pediatric Gastroenterology, Department of Pediatrics, Winnipeg, MB, Canada.

Li-Ting Li (LT)

Children's Hospital of Fudan University, The Center for Pediatric Liver Diseases, Shanghai, China.

Huiyu She (H)

Children's Hospital of Fudan University, The Center for Pediatric Liver Diseases, Shanghai, China.

Jian-She Wang (JS)

Children's Hospital of Fudan University, The Center for Pediatric Liver Diseases, Shanghai, China.

Kyung Mo Kim (KM)

Department of Pediatrics, University of Ulsan College of Medicine, Asan Medical Center Children's Hospital, Seoul, South Korea.

Seak Hee Oh (SH)

Department of Pediatrics, University of Ulsan College of Medicine, Asan Medical Center Children's Hospital, Seoul, South Korea.

Maria Camila Sanchez (MC)

Hospital Italiano Buenos Aires, Pediatric Gastroenterology and Hepatology Division, Buenos Aires, Argentina.

Maria Lorena Cavalieri (ML)

Hospital Italiano Buenos Aires, Pediatric Gastroenterology and Hepatology Division, Buenos Aires, Argentina.

Way Seah Lee (WS)

Faculty of Medicine, Department of Paediatrics, University of Malaya, Kuala Lumpur, Malaysia.

Christina Hajinicolaou (C)

Division of Paediatric Gastroenterology, Chris Hani Baragwanath Academic Hospital, Department of Paediatrics and Child Health, University of the Witwatersrand, Johannesburg, South Africa.

Chatmanee Lertudomphonwanit (C)

Ramathibodi Hospital Mahidol University, Division of Gastroenterology, Department of Pediatrics, Bangkok, Thailand.

Orith Waisbourd-Zinman (O)

Schneider Children's Medical Center of Israel, Institute of Gastroenterology, Nutrition and Liver Diseases, Petah Tikva, Sackler Faculty of Medicine, Tel-Aviv University, Israel.

Cigdem Arikan (C)

Koç University School of Medicine, Department of Pediatric Gastroenterology and Organ Transplant, Istanbul, Turkey.

Seema Alam (S)

Institute of Liver and Biliary Sciences, Department of Pediatric Hepatology, New Delhi, India.

Elisa Carvalho (E)

Pediatric Gastroenterology Department, Hospital de Base do Distrito Federal, Hospital da Criança de Brasília, Centro Universitário de Brasília, Brasília, DF, Brazil.

Melina Melere (M)

Pediatric Gastroenterology Service, Hospital da Criança Santo Antônio, Universidade Federal de Ciências da Saúde de Porto Alegre, Complexo Hospitalar Santa Casa, Porto Alegre, RS, Brazil.

John Eshun (J)

Department of Pediatric Gastroenterology, Le Bonheur Children's Hospital and The University of Tennessee Health Science Center, Memphis, Tennessee.

Zerrin Önal (Z)

Pediatric Gastroenterology, Hepatology and Nutrition Department, Istanbul University Istanbul Medical Faculty, Istanbul, Turkey.

Dev M Desai (DM)

Solid Organ Transplant Department, Children's Health - Children's Medical Center, Dallas, Texas.

Sabina Wiecek (S)

Medical University of Silesia in Katowice, Department of Pediatrics, Katowice, Poland.

Raquel Borges Pinto (RB)

Division of Pediatric Gastroenterology of Hospital da Criança Conceição do Grupo Hospitalar Conceição, Porto Alegre, RS, Brazil.

Victorien M Wolters (VM)

Department of Pediatric Gastroenterology, University Medical Center Utrecht, Utrecht, Netherlands.

Jennifer Garcia (J)

Division of Pediatric Gastroenterology, Hepatology and Nutrition/Miami Transplant Institute, University of Miami, Miami, Florida.

Marisa Beretta (M)

Faculty of Health Sciences, Wits Donald Gordon Medical Centre, University of the Witwatersrand, Johannesburg, South Africa.

Nanda Kerkar (N)

University of Rochester Medical Center, Department of Pediatrics, Division of Pediatric Gastroenterology, Hepatology and Nutrition, Rochester, NY, USA.

Jernej Brecelj (J)

University Medical Center Ljubljana, Pediatric Gastroenterology, Hepatology and Nutrition, and Department of Pediatrics, Faculty of Medicine, Ljubljana, Slovenia.

Nathalie Rock (N)

Swiss Pediatric Liver Center, Division of Pediatric Specialties, Department of Pediatrics, Gynecology, and Obstetrics, University Hospitals Geneva and University of Geneva, Geneva, Switzerland.

Eberhard Lurz (E)

Department of Pediatrics, Dr. von Hauner Children's Hospital, University Hospital, LMU Munich, Munich, Germany.

Niviann Blondet (N)

Gastroenterology & Hepatology Division, Department of Pediatrics, University of Washington, Seattle Children's Hospital, Seattle, WA, USA.

Uzma Shah (U)

Harvard Medical School, Massachusetts General Hospital for Children, Boston, MA, USA.

Richard J Thompson (RJ)

Institute of Liver Studies, King's College London, London, UK.

Binita M Kamath (BM)

The Hospital for Sick Children and the University of Toronto, Division of Gastroenterology, Hepatology and Nutrition, Toronto, ON, Canada.

Classifications MeSH