Beyond Achondroplasia

Growing together with Clara

BioMarin updates the Multicenter and Multinational Clinical Study 111-901

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The “Multicenter, Multinational Clinical Assessment Study for Pediatric Patients With Achondroplasia” is a prospective observational study. This study’s code name is 111-901.

The aim of this study is to collect systematic growth measurements of the children in order to collect data to better understand the natural history of achondroplasia.

Children between 2 and 13 years old can be enrolled in the 111-901 study. The measurements take place every 3 months and can go for up to 60 months (or 5 years).

BMN-111 will not be administered in this study. Yet, only children that participate in the study 111-901 can be enrolled in the drug study afterwards, with the code 111-301, in which BMN-111 will be administrated to 50% of participants while the others will receive a placebo.

Credits: Brakefield R. Observational Studies and Experiments, 2015

The 111-901 study is now being conducted at 21 clinical centers around the globe, and new centers have been added in the USA and centers in Spain and Turkey have been included. All centers are currently recruiting patients.

United States,


Harbor-UCLA Medical Center
Los Angeles, California, United States, 90048
Contact: Nathalia Patritti Cressey, Study Coord    310-781-3682 ext Office
Contact    310-597-1960 ext Cell
Principal Investigator: Patti Dickson, MD
Children’s Hospital and Research Center Oakland
Oakland, California, United States, 94609
Contact: Jacqueline Madden, Study Coord    510-428-3885 ext 5745
Children’s Hospital Colorado
Aurora, Colorado, United States, 80045
Contact: Laurel Ware, BSN    720-777-5378

Principal Investigator: Gary Bellus
Nemours/Alfred I. duPont Hospital for Children
Wilmington, Delaware, United States, 19803
Contact: Cassie Brown, Study Coord    302-298-7930

Contact: Michael Bober, MD
Emory University
Decatur, Georgia, United States, 30033
Contact: Elizabeth Smith, Study Coord

Contact: William Wilcox, MD

Ann and Robert H Lurie Children’s Hospital of Chicago
Chicago, Illinois, United States, 60614
Contact: Victoria Sanders, Study Coord    312-227-6120
Indiana University, Riley Children’s Hospital
Indianapolis, Indiana, United States, 46202
Contact: Susan Romie    317-278-6650

Principal Investigator: David Weaver, MD
Johns Hopkins McKusick- Institute of Genetic Medicine
Baltimore, Maryland, United States, 21287
Contact: Adekemi Alade, Study Coord

Contact: Kira Lurman, Study Coord

University of Missouri
Columbia, Missouri, United States, 65201
Contact: Vicki L Jones, Study Coord    573-882-7583

Contact: Daniel G Hoernschemeyer, MD    573-882-1351
Principal Investigator: Daniel G Hoernschemeyer, MD
Cincinnati Children’s Hospital Medical Center
Cincinnati, Ohio, United States, 45229
Contact: Racheal Powers    800-647-4805
Principal Investigator: Howard Saal, MD
Vanderbilt University
Nashville, Tennessee, United States, 37232
Contact: LeeAnna Melton, Study Coord    615-343-6761

Baylor College of Medicine
Houston, Texas, United States, 77030
Contact: Catherine Loffredo, Study Coord

Seattle Children’s Hospital
Seattle, Washington, United States, 98105
Contact: Tressa Mattioli-Lewis

Contact: Klane White, MD

Principal Investigator: Klane White, MD
Medical College of Wisconsin, Children’s Hospital
Milwaukee, Wisconsin, United States, 53226
Contact: Paula Engelking    414-266-3289

Contact: Donald Basel, MD

Principal Investigator: Donald Basel, MD


Australia, Victoria
Murdoch Children’s Research Institute
Parkville, Victoria, Australia, 3052


Institut Necker
Paris, France, 75015
Contact: Kim-Hahn Le Quan Sang, MD    33 1 44 49 59 51

Principal Investigator: Valerie Cormier-Daire, MD


Institut Catala de Traumatologica I Medicina de l’Esport
Barcelona, Spain, 08028
Contact: Miriam Perez    +34 932 05 43 62 ext 21148

Contact: Ignacio Ginebreda    +34 619 21 35 77

Principal Investigator: Ignacio Ginebreda
Hospital Sant Joan de Deu Barcelona
Barcelona, Spain, 08950
Contact: Jose Maria de Bergua    +34 650 80 60 71
Contact: Rosendo Ullot    +34 650 80 60 71

Principal Investigator: Rosendo Ullot
Hospital Universitario Virgen de la Victoria
Málaga, Spain, 29010
Contact: Antonio Leiva    +34 646 56 87 89
Contact: Felipe Luna    +34 607 85 81 22
Principal Investigator: Felipe Luna


Acibadem University School of Medicine
Istanbul, Turkey, 34752
Contact: Beyzanur Gonenc    +90 532 300 09 13

Contact: Burcu Menderes    +90 555 313 40 86

Principal Investigator: Yesemin Alanay, MD
Sub-Investigator: Selda Karaayvaz


United Kingdom
Guy’s and St. Thomas NHS Foundation Trust Evelina Children’s Hospital
London, United Kingdom, SE1 9RT
Principal Investigator: Melita Irving, MD

Information available on

One Comment

  1. Many thanks for all these helpufll information!

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