Last updated on August 2018

Fabry Disease Registry


Brief description of study

The Fabry Registry is an ongoing, international multi-center, strictly observational program that tracks the routine clinical outcomes for patients with Fabry disease, irrespective of treatment status. No experimental intervention is involved; patients in the Registry undergo clinical assessments and receive care as determined by the patient's treating physician.

The objectives of the Registry are:

  • To enhance the understanding of the variability, progression, and natural history of Fabry disease, including heterozygous females with the disease;
  • To assist the Fabry medical community with the development of recommendations for monitoring patients and reports on patient outcomes to help optimize patient care;
  • To characterize and describe the Fabry population as a whole; and
  • To evaluate the long-term safety and effectiveness of Fabrazyme

Detailed Study Description

The Fabry Registry is an international program; in addition to the central contact information provided under the "Location" heading, patients may contact:

Clinical Study Identifier: NCT00196742

Contact Investigators or Research Sites near you

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Investigational Site Number 840042
Sacramento, CA United States
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Investigational Site Number 840096
Tampa, FL United States
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Investigational Site Number 840092
Boston, MA United States
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Investigational Site Number 840090
Helena, MT United States
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Investigational Site Number 840099
Morristown, NJ United States
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Investigational Site Number 840057
Paterson, NJ United States
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Investigational Site Number 840048
Cleveland, OH United States
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Investigational Site Number 840097
Columbus, OH United States
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Investigational Site Number 840094
Dublin, OH United States
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Investigational Site Number 153040
Parkville, Australia
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Investigational Site Number 153090
Perth, Australia
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Investigational Site Number 153139
Coquimbo, Chile
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Investigational Site Number 152003
Iquique, Chile
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Investigational Site Number 153235
Iquique, Chile
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Investigational Site Number 152002
Santiago, Chile
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Investigational Site Number 153150
Santiago, Chile
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Investigational Site Number 250005
Bordeaux, France
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Investigational Site Number 153236
Lille, France
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Investigational Site Number 250007
Lille, France
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Investigational Site Number 153224
LIMOGES Cedex, France
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Investigational Site Number 250003
LIMOGES Cedex, France
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Investigational Site Number 153234
Marseille, France
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Investigational Site Number 250006
Marseille, France
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Investigational Site Number 250004
Saint Priest en Jarez, France
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Investigational Site Number 250008
Toulouse, France
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Investigational Site Number 344001
Kowloon, Hong Kong
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Investigational Site Number 380002
Bassano del Grappa (VI), Italy
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Investigational Site Number 380004
Firenze, Italy
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Investigational Site Number 152013
Genova, Italy
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Investigational Site Number 380005
Genova, Italy
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Investigational Site Number 380009
Milano, Italy
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Investigational Site Number 380006
Milano, Italy
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Investigational Site Number 380003
Modena, Italy
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Investigational Site Number 380010
Monza (MB), Italy
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Investigational Site Number 380008
Napoli, Italy
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Investigational Site Number 380007
Rimini, Italy
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Investigational Site Number 380001
Udine, Italy
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Investigational Site Number 153205
Abeno-ku, Japan
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Investigational Site Number 153217
Chiba, Japan
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Investigational Site Number 153201
Nangoku-shi, Japan
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Investigational Site Number 392006
Niigata, Japan
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Investigational Site Number 153204
Setagaya, Japan
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Investigational Site Number 153199
Busan, Korea, Republic of
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Investigational Site Number 153191
Daejeon, Korea, Republic of
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Investigational Site Number 153228
Jeju-si, Korea, Republic of
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Investigational Site Number 153225
Jeonnam, Korea, Republic of
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Investigational Site Number 151149
Seoul, Korea, Republic of
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Investigational Site Number 153176
Seoul, Korea, Republic of
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Investigational Site Number 153180
Seoul, Korea, Republic of
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Investigational Site Number 153188
Seoul, Korea, Republic of
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Investigational Site Number 153192
Seoul, Korea, Republic of
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Investigational Site Number 153196
Seoul, Korea, Republic of
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Investigational Site Number 153212
Seoul, Korea, Republic of
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Investigational Site Number 153222
Seoul, Korea, Republic of
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Investigational Site Number 458001
Jalan Pahang, Malaysia
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Investigational Site Number 608001
Manila, Philippines
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Investigational Site Number 620001
Porto, Portugal
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Investigational Site Number 702001
Singapore, Singapore
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Investigational Site Number 703001
Bratislava, Slovakia
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Investigational Site Number 151182
Taipei, Taiwan
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Investigational Site Number 764002
Bangkok, Thailand
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Investigational Site Number 764003
Bangkok, Thailand
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Investigational Site Number 764001
Bangkok, Thailand
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Investigational Site Number 380002
Bassano Del Grappa (VI), Italy
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Investigational Site Number 840018
Birmingham, AL United States
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Investigational Site Number 840073
Birmingham, AL United States
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Investigational Site Number 840109
Little Rock, AR United States
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Little Rock, AR United States
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Investigational Site Number 840108
Los Angeles, CA United States
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Investigational Site Number 840047
New Haven, CT United States
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Investigational Site Number 840067
Washington, WA United States
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Investigational Site Number 840075
Coral Springs, FL United States
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Investigational Site Number 840083
Gainesville, FL United States
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Jacksonville, FL United States
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Investigational Site Number 840060
Decatur, GA United States
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Investigational Site Number 840013
Chicago, IL United States
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Investigational Site Number 840079
Chicago, IL United States
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Investigational Site Number 840027
Indianapolis, IN United States
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Investigational Site Number 840032
Iowa City, IA United States
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Investigational Site Number 840071
Kansas City, KS United States
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Investigational Site Number 840030
Louisville, KY United States
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Investigational Site Number 840001
New Orleans, LA United States
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Investigational Site Number 840064
Portland, ME United States
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Baltimore, MD United States
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Boston, MA United States
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Investigational Site Number 840103
Boston, MA United States
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Investigational Site Number 840002
Springfield, MA United States
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Investigational Site Number 840107
Ann Arbor, MI United States
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Investigational Site Number 840050
Grand Rapids, MI United States
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Investigational Site Number 840046
Minneapolis, MN United States
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Investigational Site Number 840031
Columibia, MO United States
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Investigational Site Number 840100
Saint Louis, MO United States
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Investigational Site Number 840084
Omaha, NE United States
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Investigational Site Number 840098
Camden, NJ United States
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Investigational Site Number 840101
Hackensack, NJ United States
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Investigational Site Number 840016
New Brunswick, NJ United States
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Investigational Site Number 840102
Manhasset, NY United States
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Investigational Site Number 840040
New York, NY United States
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Investigational Site Number 840080
New York, NY United States
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Investigational Site Number 840110
New York, NY United States
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Investigational Site Number 840105
Rochester, NY United States
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Investigational Site Number 840052
Syracuse, NY United States
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Investigational Site Number 840039
Valhalla, NY United States
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Investigational Site Number 840065
Charlotte, NC United States
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Investigational Site Number 840045
Durham, NC United States
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Investigational Site Number 840033
Cincinnati, OH United States
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Investigational Site Number 840111
Danville, PA United States
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Investigational Site Number 840104
Hershey, PA United States
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Investigational Site Number 840089
Philadelphia, PA United States
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Investigational Site Number 840034
Philadelphia, PA United States
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Investigational Site Number 840023
Pittsburgh, PA United States
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Investigational Site Number 840053
Providence, RI United States
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Investigational Site Number 840055
Greenville, SC United States
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Investigational Site Number 840049
Nashville, TN United States
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Investigational Site Number 840058
Dallas, TX United States
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Investigational Site Number 840024
Fort Worth, TX United States
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Investigational Site Number 840078
Charlottesville, VA United States
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Investigational Site Number 840025
Fairfax, VA United States
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Investigational Site Number 840072
Norfolk, VA United States
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Investigational Site Number 840054
Milwaukee, WI United States
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Investigational Site Number 153130
Buenos Aires, Argentina
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Investigational Site Number 153172
Caba, Argentina
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Investigational Site Number 153194
Catamarca, Argentina
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Investigational Site Number 032004
Santa Fe, Argentina
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Investigational Site Number 151002
Adelaide, Australia
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Investigational Site Number 153063
Herston, Australia
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Investigational Site Number 151069
Westmead, Australia
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Investigational Site Number 150722
Antwerpen, Belgium
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Investigational Site Number 153133
Antwerpen, Belgium
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Investigational Site Number 153001
Brussels, Belgium
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Investigational Site Number 151668
Leuven, Belgium
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Investigational Site Number 153100
Seraing, Belgium
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Investigational Site Number 076004
Curitiba, Brazil
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Investigational Site Number 076008
Feira de Santana, Brazil
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Investigational Site Number 076012
Florianopolis, Brazil
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Investigational Site Number 076011
Ourinhos, Brazil
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Investigational Site Number 076005
Recife, Brazil
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Investigational Site Number 076002
Tapejara, Brazil
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Investigational Site Number 124022
Moncton, Canada
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Investigational Site Number 152004
Antofagasta, Chile
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Investigational Site Number 152001
Coquimbo, Chile
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Investigational Site Number 153041
Copenhagen, Denmark
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Investigational Site Number 153106
Tartu, Estonia
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Investigational Site Number 153024
Turku, Finland
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Investigational Site Number 250009
Strasbourg, France
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Investigational Site Number 154162
Budapest, Hungary
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Investigational Site Number 356001
Kolkata, India
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Investigational Site Number 380013
Firenze, Italy
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Investigational Site Number 380012
Roma, Italy
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Investigational Site Number 380011
Torino, Italy
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Investigational Site Number 380014
Vittoria (RG), Italy
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Investigational Site Number 392007
Kobe-shi, Hyogo, Japan
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Investigational Site Number 154148
Yangsan, Korea, Republic of
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Investigational Site Number 154208
Yangsan, Korea, Republic of
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Investigational Site Number 154225
Kuwait, Kuwait
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Investigational Site Number 458002
Kuala Lumpur, Malaysia
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Investigational Site Number 151171
Amsterdam, Netherlands
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Investigational Site Number 153141
Bergen, Norway
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Investigational Site Number 604002
Callao, Peru
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Investigational Site Number 150575
Warszawa, Poland
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Investigational Site Number 620005
Lisboa, Portugal
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Investigational Site Number 154099
Bucuresti, Romania
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Investigational Site Number 154164
Bucuresti, Romania
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Investigational Site Number 643001
Moscow, Russian Federation
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Investigational Site Number 643003
Nizhny Novgorod, Russian Federation
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Investigational Site Number 643002
Saint-Peterburg, Russian Federation
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Investigational Site Number 643004
Tomsk, Russian Federation
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Investigational Site Number 154135
Barakaldo, Spain
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Investigational Site Number 153237
Barcelona, Spain
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Investigational Site Number 154204
Barcelona, Spain
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Investigational Site Number 153077
Barcelona, Spain
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Investigational Site Number 151524
Pamplona, Spain
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Investigational Site Number 154118
Pamplona, Spain
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Investigational Site Number 154136
Tarragona, Spain
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Investigational Site Number 153213
Vigo, Spain
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Investigational Site Number 151484
Stockholm, Sweden
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Investigational Site Number 154093
Chiayi, Taiwan
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Investigational Site Number 152152
Hualien, Taiwan
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Investigational Site Number 152246
Kaohsiung Hsien,, Taiwan
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Investigational Site Number 152244
Kaohsiung, Taiwan
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Investigational Site Number 151534
New Taipei City, Taiwan
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Investigational Site Number 151500
Putz City, Chia-yi, Taiwan
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Investigational Site Number 151179
Taichung City, Taiwan
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Investigational Site Number 151181
Taichung, Taiwan
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Investigational Site Number 152153
Tainan, Taiwan
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Investigational Site Number 153248
Tainan, Taiwan
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Investigational Site Number 152321
Taipei, Taiwan
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Investigational Site Number 152226
Taipei, Taiwan
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Investigational Site Number 153158
Tao Yuan County, Taiwan
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Investigational Site Number 764004
Bangkok, Thailand
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Investigational Site Number 154196
Belfast, United Kingdom
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Investigational Site Number 032002
Ciudad Autónoma de Buenos Aires, Argentina
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Investigational Site Number 153032
Ciudad Autónoma de Buenos Aires, Argentina
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Investigational Site Number 076009
Brasília, Brazil
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Investigational Site Number 076006
Cuiabá, Brazil
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São Paulo, Brazil
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Uberlândia, Brazil
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Investigational Site Number 170001
Bogotá, Colombia
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Investigational Site Number 151229
København Ø, Denmark
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Investigational Site Number 154150
Gießen, Germany
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Investigational Site Number 154197
Létavértes, Hungary
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Investigational Site Number 154146
La Coruña, Spain
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Investigational Site Number 154159
La Coruña, Spain
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Investigational Site Number 153050
Göteborg, Sweden
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