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Survey about achondroplasia
We have designed a questionnaire with the purpose to better know the population connected to achondroplasia.
The questionnaire is optional and anonymous. The data obtained will be used for statistical purposes and to better understand the natural history of achondroplasia. Please consider answering.
If you would like to take the survey later, you can click on the link at the top "Register at BA"

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.
Sem Título
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.

Locations:

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
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Children's Hospital Colorado  
Aurora, Colorado, United States, 80045
Contact: Laurel Ware, BSN      720-777-5378

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

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

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Contact: William Wilcox, MD

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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

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

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Contact: Kira Lurman, Study Coord

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

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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

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

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

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Contact: Klane White, MD

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

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Contact: Donald Basel, MD

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Principal Investigator: Donald Basel, MD

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

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

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Principal Investigator: Valerie Cormier-Daire, MD

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

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Contact: Ignacio Ginebreda      +34 619 21 35 77

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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

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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

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

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Contact: Burcu Menderes      +90 555 313 40 86

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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 Clinicaltrials.gov
 
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