Pompe Disease Registry Protocol

RecruitingOBSERVATIONAL
Enrollment

2,000

Participants

Timeline

Start Date

September 15, 2004

Primary Completion Date

January 31, 2034

Study Completion Date

January 31, 2034

Conditions
Glycogen Storage Disease Type IIPompe Disease
Trial Locations (271)

100

RECRUITING

Investigational Site Number : 151182, Taipei

112

RECRUITING

Investigational Site Number : 152226, Taipei

261

RECRUITING

Investigational Site Number : 4000001, Amman

333

RECRUITING

Investigational Site Number : 153158, Taoyuan

404

RECRUITING

Investigational Site Number : 151179, Taichung

704

RECRUITING

Investigational Site Number : 153248, Tainan City

710

RECRUITING

Investigational Site Number : 152153, Tainan City

807

RECRUITING

Investigational Site Number : 152244, Kaohsiung City

833

RECRUITING

Investigational Site Number : 152246, Kaohsiung City

1000

RECRUITING

Investigational Site Number : 608001, Manila

1070

COMPLETED

Investigational Site Number : 150684, Brussels

1200

RECRUITING

Investigational Site Number : 056010, Brussels

1424

RECRUITING

Investigational Site Number : 152218, CABA

1425

COMPLETED

Investigational Site Number : 153032, Ciudad Autónoma de Buenos Aires

1680

RECRUITING

Investigational Site Number : 100001, Sofia

2020

RECRUITING

Investigational Site Number : 150722, Antwerp

2100

RECRUITING

Investigational Site Number : 151229, København Ø

2145

RECRUITING

Investigational Site Number : 036013, Westmead

RECRUITING

Investigational Site Number : 151069, Westmead

2650

RECRUITING

Investigational Site Number : 152072, Edegem

3000

RECRUITING

Investigational Site Number : 151668, Leuven

RECRUITING

Investigational Site Number : 152126, Leuven

4029

COMPLETED

Investigational Site Number : 154087, Brisbane

4032

RECRUITING

Investigational Site Number : 3480009, Debrecen

4101

TERMINATED

Investigational Site Number : 152096, Brisbane

4400

RECRUITING

Investigational Site Number : 3480007, Nyíregyháza

6041

RECRUITING

Investigational Site Number : 153179, Gosselies

6150

RECRUITING

Investigational Site Number : 151015, Murdoch

7632

RECRUITING

Investigational Site Number : 3480011, Pécs

8000

RECRUITING

Investigational Site Number : 154298, Bruges

9000

RECRUITING

Investigational Site Number : 152295, Ghent

10000

RECRUITING

Investigational Site Number : 1910001, Zagreb

RECRUITING

Investigational Site Number : 1910002, Zagreb

10016

RECRUITING

New York University School Of Medicine- Site Number : 840040, New York

10029

RECRUITING

Mt. Sinai School of Medicine- Site Number : 840005, New York

10126

RECRUITING

Investigational Site Number : 380017, Torino

10400

COMPLETED

Investigational Site Number : 764002, Bangkok

RECRUITING

Investigational Site Number : 764003, Bangkok

10449

RECRUITING

Investigational Site Number : 152321, Taipei

10595

RECRUITING

New York Medical College- Site Number : 840039, Valhalla

10700

RECRUITING

Investigational Site Number : 764004, Bangkok

11000

COMPLETED

Investigational Site Number : 6880001, Belgrade

11030

RECRUITING

Northwell Health- Site Number : 840102, Manhasset

12808

RECRUITING

Investigational Site Number : 150809, Prague

13125

COMPLETED

Investigational Site Number : 152041, Berlin

13210

RECRUITING

State University of New York- Site Number : 840052, Syracuse

13353

RECRUITING

Investigational Site Number : 151686, Berlin

RECRUITING

Investigational Site Number : 152293, Berlin

13385

COMPLETED

Investigational Site Number : 250002, Marseille

14033

RECRUITING

Investigational Site Number : 250009, Caen

14642

COMPLETED

University of Rochester Medical Center SOM- Site Number : 840105, Rochester

15213

RECRUITING

UPMC- Site Number : 840014, Pittsburgh

15224

RECRUITING

University of Pittsburgh- Site Number : 840023, Pittsburgh

16147

RECRUITING

Investigational Site Number : 380004, Genova

17033

COMPLETED

Penn Hershey Medical Center- Site Number : 840061, Hershey

RECRUITING

Penn State Health Milton South Hershey Medical Center- Site Number : 840126, Hershey

19104

RECRUITING

Children's Hospital of Philadelphia HUP Medical Genetics- Site Number : 840089, Philadelphia

RECRUITING

Children's Hospital of Philadelphia- Site Number : 840034, Philadelphia

20010

RECRUITING

Children's National Medical Center- Site Number : 840067, Washington D.C.

20122

RECRUITING

Investigational Site Number : 380016, Milan

20133

RECRUITING

Investigational Site Number : 380007, Milan

20354

RECRUITING

Investigational Site Number : 154215, Hamburg

21205

COMPLETED

John Hopkins- Site Number : 840044, Baltimore

21955

RECRUITING

Investigational Site Number : 682004, Mecca

22030

RECRUITING

O&O Alpan, LLC- Site Number : 840025, Fairfax

22908

COMPLETED

University of Virginia School of Medicine-Pediatrics- Site Number : 840078, Charlottesville

23142

RECRUITING

Investigational Site Number : 151534, New Taipei City

23507

COMPLETED

Children's Hospital of the Kings Daughters- Site Number : 840072, Norfolk

25123

RECRUITING

Investigational Site Number : 380008, Brescia

27100

RECRUITING

Investigational Site Number : 380003, Pavia

27710

RECRUITING

Duke University Medical Center Genetics Dept- Site Number : 840037, Durham

28232

RECRUITING

Carolinas Medical Center Hospital- Site Number : 840065, Charlotte

29200

RECRUITING

Investigational Site Number : 250012, Brest

29605

RECRUITING

Greenwood Genetcs- Site Number : 840055, Greenville

30029

RECRUITING

Investigational Site Number : 250011, Nîmes

30033

RECRUITING

Emory University School of Medicine- Human Genetics- Site Number : 840060, Decatur

31059

RECRUITING

Investigational Site Number : 250014, Toulouse

32207

RECRUITING

University of Florida Pediatrics Genetics- Site Number : 840121, Jacksonville

32610

RECRUITING

University of Florida College of Medicine- Site Number : 840012, Gainesville

33076

COMPLETED

Investigational Site Number : 250010, Bordeaux

33100

RECRUITING

Investigational Site Number : 380001, Udine

33136

RECRUITING

University Of Miami SOM- Site Number : 840006, Miami

33606

RECRUITING

University of Florida-Genetics- Site Number : 840096, Tampa

35128

RECRUITING

Investigational Site Number : 380011, Padua

RECRUITING

Investigational Site Number : 380002, Padua

35233

RECRUITING

University Alabama at Birmingham- Site Number : 840106, Birmingham

35392

RECRUITING

Investigational Site Number : 154150, Giessen

37032

RECRUITING

Investigational Site Number : 250006, Tours

38232

RECRUITING

Vanderbilt University Hospital-Pediatrics- Site Number : 840049, Nashville

38700

RECRUITING

Investigational Site Number : 250015, La Tronche

40002

RECRUITING

Investigational Site Number : 764005, Khon Kaen

40202

COMPLETED

University of Louisville- Genetics- Site Number : 840030, Louisville

42270

RECRUITING

Investigational Site Number : 250018, Saint-Priest-en-Jarez

43017

RECRUITING

LSD Data Registry Site LLC- Site Number : 840094, Dublin

44093

RECRUITING

Investigational Site Number : 250019, Nantes

44106

RECRUITING

University Hospitals Cleveland Medical Center- Site Number : 840119, Cleveland

44124

RECRUITING

Investigational Site Number : 380014, Ferrara

44195

RECRUITING

Cleveland Clinic Foundation Pediatrics- Site Number : 840048, Cleveland

44789

RECRUITING

Investigational Site Number : 152234, Bochum

45221

RECRUITING

University of Cincinnati Cancer Institute- Site Number : 840124, Cincinnati

45229

RECRUITING

Cincinnati Children's Hospital-Genetics- Site Number : 840041, Cincinnati

46202

RECRUITING

Indianapolis University School of Medicine- Site Number : 840027, Indianapolis

48109

RECRUITING

University of Michigan Pediatrics- Site Number : 840107, Ann Arbor

48149

COMPLETED

Investigational Site Number : 152299, Münster

48201

RECRUITING

Children's Hospital of Michigan- Site Number : 840066, Detroit

49503

COMPLETED

Spectrum for Health- Site Number : 840019, Grand Rapids

49525

RECRUITING

Infusion Associates- Site Number : 840050, Grand Rapids

50141

RECRUITING

Investigational Site Number : 380005, Florence

50586

RECRUITING

Investigational Site Number : 458001, Jalan Pahang

50612

COMPLETED

Investigational Site Number : 153178, Yangsan

52242

RECRUITING

University of Iowa- Site Number : 840032, Iowa City

53127

RECRUITING

Investigational Site Number : 152200, Bonn

53226

RECRUITING

Children's Hospital of Wisconsin-Pediatrics- Site Number : 840054, Milwaukee

54035

RECRUITING

Investigational Site Number : 250017, Nancy

55131

RECRUITING

Investigational Site Number : 150031, Mainz

55404

RECRUITING

Children's Health Care- Site Number : 840114, Minneapolis

COMPLETED

Children's Hospital and Clinics of Minnesota- Site Number : 840046, Minneapolis

55455

RECRUITING

University of Minnesota Medical Center Pediatrics- Site Number : 840035, Minneapolis

RECRUITING

University of Minnesota Medical Center Pediatrics- Site Number : 840076, Minneapolis

56017

RECRUITING

Investigational Site Number : 25013, Vannes

56126

RECRUITING

Investigational Site Number : 157218, Pisa

59037

RECRUITING

Investigational Site Number : 250008, Lille

59100

RECRUITING

Investigational Site Number : 458002, Kuala Lumpur

60611

RECRUITING

Ann and Robert Lurie Children's Hospital- Site Number : 840011, Chicago

RECRUITING

Ann and Robert Lurie Children's Hospital- Site Number : 840013, Chicago

60612

RECRUITING

Rush University Medical Center Genetics- Site Number : 840079, Chicago

63110

RECRUITING

Washington University of St. Louis- Site Number : 840100, St Louis

64108

COMPLETED

Children's Mercy Hospital- Pediatrics- Site Number : 840063, Kansas City

65212

RECRUITING

University of Missouri Health System Department of Genetics- Site Number : 840031, Columbia

66160

RECRUITING

University of Kansas Medical Center- Site Number : 840020, Kansas City

67200

RECRUITING

Investigational Site Number : 250016, Strasbourg

68198

RECRUITING

University of Nebraska Medical Center- Pediatrics- Site Number : 840084, Omaha

69677

RECRUITING

Investigational Site Number : 250003, Bron

RECRUITING

Investigational Site Number : 250007, Bron

72202

RECRUITING

Arkansas Childrens Hospital- Site Number : 840109, Little Rock

72205

RECRUITING

University of Arkansas for Medical Sciences- Site Number : 840113, Little Rock

75015

RECRUITING

Investigational Site Number : 250004, Paris

75226

RECRUITING

Baylor Research Center- Site Number : 840058, Dallas

75651

RECRUITING

Investigational Site Number : 250001, Paris

76104

RECRUITING

Cook Children's Health Care System- Site Number : 840024, Fort Worth

79106

RECRUITING

Investigational Site Number : 152108, Freiburg im Breisgau

80045

COMPLETED

Children's Hospital Colorado - Aurora- Site Number : 840069, Aurora

RECRUITING

University of Colorado at Denver Genetics- Site Number : 840068, Aurora

80336

RECRUITING

Investigational Site Number : 152075, München

83340

COMPLETED

Investigational Site Number : 703001, Bratislava

84132

RECRUITING

University of Utah Department of Medical Genetics- Site Number : 840043, Salt Lake City

85013

RECRUITING

Barrow Neurological Institute- Site Number : 840087, Phoenix

RECRUITING

Phoenix Children's Hospital- Site Number : 840003, Phoenix

85724

RECRUITING

University of Arizona- Site Number : 840015, Tucson

89109

RECRUITING

Children's Specialty Center of Nevada- Site Number : 840008, Las Vegas

90027

RECRUITING

Southern California Permanente Medical Group- Site Number : 840108, Los Angeles

90033

COMPLETED

USC Health Sciences Center Dept of Genetics- Site Number : 840082, Los Angeles

90211

RECRUITING

University of California at Irvine- Site Number : 840036, Irvine

92093

COMPLETED

University of California at San Diego- Site Number : 840007, San Diego

92354

COMPLETED

Loma Linda University- Genetics- Site Number : 840070, Loma Linda

92868

RECRUITING

Children's Hospital of Orange County- Site Number : 840074, Orange

94305

RECRUITING

Stanford University Pediatrics- Site Number : 840021, Stanford

94609

COMPLETED

Children's Hospital Oakland- Site Number : 840029, Oakland

95817

RECRUITING

UC Davis MIND Institute- Site Number : 840010, Sacramento

97201

RECRUITING

Oregon Health & Sciences University- Site Number : 840080, Portland

97239

TERMINATED

Oregon Health and Science University- Site Number : 840095, Portland

TERMINATED

Oregon Health and Scinece University- Site Number : 840038, Portland

98105

RECRUITING

Seattle Children's Hospital- Site Number : 840028, Seattle

98125

RECRUITING

Investigational Site Number : 380013, Messina

98195

RECRUITING

University Of Washington Medical Center- Site Number : 840059, Seattle

98415

RECRUITING

Multicare Health System ¿ Mary Bridge Childrens Hospital- Site Number : 840115, Tacoma

117218

COMPLETED

Investigational Site Number : 643002, Moscow

200092

TERMINATED

Investigational Site Number : 152356, Shanghai

229899

RECRUITING

Investigational Site Number : 702001, Singapore

250014

TERMINATED

Investigational Site Number : 152381, Jinan

RECRUITING

Investigational Site Number : 157250, Jinan

380015

RECRUITING

Investigational Site Number : 356003, Ahmedabad

500026

RECRUITING

Investigational Site Number : 3560004, Secunderabad

510000

TERMINATED

Investigational Site Number : 152379, Guangzhou

632004

RECRUITING

Investigational Site Number : 356002, Vellore

700000

RECRUITING

Investigational Site Number : 704002, Ho Chi Minh City

700017

RECRUITING

Investigational Site Number : 356001, Kolkata

11072210

RECRUITING

Investigational Site Number : 4220004, Beirut

22250020

RECRUITING

Instituto Fernandes Figueira - FIOCRUZ- Site Number : 076001, Rio de Janeiro

94143-0748

RECRUITING

University of California at San Francisco- Site Number : 840051, San Francisco

06520

RECRUITING

Yale - Site Number : 840047, New Haven

04102

RECRUITING

Maine Medical Center Pediatrics- Site Number : 840064, Portland

02114

RECRUITING

Massachusetts General Hospital-Genetics- Site Number : 840062, Boston

02115

RECRUITING

Boston Children's Hospital- Site Number : 840092, Boston

01199

RECRUITING

Baystate Health- Site Number : 840002, Springfield

08103

TERMINATED

Cooper Health Center- Site Number : 840098, Camden

07601

RECRUITING

Hackensack University Medical Center- Site Number : 840101, Hackensack

07962

RECRUITING

Atlantic Health System- Site Number : 840099, Morristown

08901

RECRUITING

St. Peter's University Hospital- Site Number : 840016, New Brunswick

07503

RECRUITING

St. Joseph's Children's Hospital- Site Number : 840057, Paterson

10029-7494

RECRUITING

Metropolitan Hospital Center- Site Number : 840110, New York

43205-2664

RECRUITING

Nationwide Children's Hospital- Site Number : 840091, Columbus

02903

COMPLETED

Rhode Island Hospital Genetics- Site Number : 840053, Providence

CPC1181ACH

ACTIVE_NOT_RECRUITING

Investigational Site Number : 153194, CABA

60430-270

RECRUITING

Hospital Universitario Walter Cantidio- Site Number : 076011, Fortaleza

78025-000

RECRUITING

Hospital Geral e Maternidade de Cuiabá- Site Number : 076003, Cuiabá

90035-903

RECRUITING

Hospital de Clinicas de Porto Alegre- Site Number : 076008, Porto Alegre

14049-900

RECRUITING

Hospital das Clinicas da Faculdade de Medicina de Ribeirao Preto- Site Number : 076009, Ribeirão Preto

04020-041

RECRUITING

Instituto de Genética e Erros Inatos do Metabolismo- Site Number : 076002, São Paulo

05403-000

RECRUITING

Hospital das Clinicas da Faculdade de Medicina da Universidade de Sao Paulo- Site Number : 076004, São Paulo

RECRUITING

Hospital das Clinicas da Faculdade de Medicina da Universidade de Sao Paulo- Site Number : 076007, São Paulo

T2E 7Z4

RECRUITING

Investigational Site Number : 124014, Calgary

TG62B7

RECRUITING

Investigational Site Number : 124002, Edmonton

V5Z1M9

RECRUITING

Investigational Site Number : 124010, Vancouver

V6H3N1

COMPLETED

Investigational Site Number : 124011, Vancouver

R3A1R9

RECRUITING

Investigational Site Number : 124019, Winnipeg

E1C 2Z3

RECRUITING

Investigational Site Number : 124022, Moncton

L8N3Z5

RECRUITING

Investigational Site Number : 124007, Hamilton

N6A 5W9

RECRUITING

Investigational Site Number : 124021, London

M5G 1X8

RECRUITING

Investigational Site Number : 124006, Toronto

H3A2B4

RECRUITING

Investigational Site Number : 124004, Montreal

H4A3J1

RECRUITING

Investigational Site Number : 124018, Montreal

J1H5N4

RECRUITING

Investigational Site Number : 124001, Sherbrooke

Unknown

COMPLETED

Investigational Site Number : 152002, Punta Arenas

RECRUITING

Investigational Site Number : 152001, Santiago

TERMINATED

Investigational Site Number : 152380, Beijing

TERMINATED

Investigational Site Number : 153202, Beijing

COMPLETED

Investigational Site Number : 153203, Beijing

TERMINATED

Investigational Site Number : 152382, Shanghai

RECRUITING

Investigational Site Number : 170001, Bogotá

RECRUITING

Investigational Site Number : 344001, Kowloon

RECRUITING

Investigational Site Number : 360001, Jakarta

RECRUITING

Investigational Site Number : 3760002, Beersheba

RECRUITING

Investigational Site Number : 3760001, Haifa

COMPLETED

Investigational Site Number : 3760003, Tel Aviv

RECRUITING

Investigational Site Number : 380009, Monza

RECRUITING

Investigational Site Number : 380010, Napoli

RECRUITING

Investigational Site Number : 380019, Napoli

RECRUITING

Investigational Site Number : 380012, Roma

COMPLETED

Investigational Site Number : 154225, Kuwait City

RECRUITING

Investigational Site Number : 154264, Karachi

RECRUITING

Investigational Site Number : 154266, Lahore

COMPLETED

Investigational Site Number : 682001, Al Qaţīf

RECRUITING

Investigational Site Number : 153191, Daejeon

RECRUITING

Investigational Site Number : 153212, Seoul

RECRUITING

Investigational Site Number : 153222, Seoul

RECRUITING

Investigational Site Number : 154093, Chiayi City

RECRUITING

Investigational Site Number : 152152, Hualien City

RECRUITING

Investigational Site Number : 151500, Putz City, Chia-yi

RECRUITING

Investigational Site Number : 764001, Bangkok

RECRUITING

Investigational Site Number : 7840001, Dubai

RECRUITING

Investigational Site Number : 154212, Hanoi

06001

RECRUITING

Investigational Site Number : 250005, Nice

06120

RECRUITING

Investigational Site Number : 152045, Halle

546 42

RECRUITING

Investigational Site Number : 300001, Thessaloniki

09126

RECRUITING

Investigational Site Number : 380006, Cagliari

00165

RECRUITING

Investigational Site Number : 380015, Roma

606-8507

COMPLETED

Investigational Site Number : 392106, Sakyo-ku

901-2214

COMPLETED

Investigational Site Number : 392105, Ginowan

3015 CE

RECRUITING

Investigational Site Number : 152029, Rotterdam

04-730

RECRUITING

Investigational Site Number : 150575, Warsaw

3000-075

RECRUITING

Investigational Site Number : 620008, Coimbra

1649-035

RECRUITING

Investigational Site Number : 620006, Lisbon

022328

RECRUITING

Investigational Site Number : 154099, Bucharest

03080

RECRUITING

Investigational Site Number : 153180, Seoul

COMPLETED

Investigational Site Number : 153196, Seoul

06273

RECRUITING

Investigational Site Number : 153176, Seoul

04401

COMPLETED

Investigational Site Number : 153192, Seoul

05505

RECRUITING

Investigational Site Number : 151149, Seoul

00407

RECRUITING

Investigational Site Number : 151181, Taichung

CB2 2QQ

RECRUITING

Investigational Site Number : 151340, Cambridge

CF14 4XW

RECRUITING

Investigational Site Number : 152334, Cardiff

B15 2TH

RECRUITING

Investigational Site Number : 152287, Birmingham

NW1 2BU

RECRUITING

Investigational Site Number : 151646, London

WC1N 3JH

RECRUITING

Investigational Site Number : 150303, London

M6 8HD

RECRUITING

Investigational Site Number : 150964, Salford

B46NH

RECRUITING

Investigational Site Number : 154240, Birmingham

G514TF

RECRUITING

Investigational Site Number : 152156, Glasgow

NW32QG

RECRUITING

Investigational Site Number : 151123, London

M8 5RB

RECRUITING

Investigational Site Number : 150455, Manchester

NE13BZ

RECRUITING

Investigational Site Number : 152087, Newcastle

All Listed Sponsors
lead

Genzyme, a Sanofi Company

INDUSTRY