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Juvenile Idiopathic Arthritis (JIA) Registry

Completed
Conditions
Juvenile Idiopathic Arthritis
JIA
Interventions
Registration Number
NCT00783510
Lead Sponsor
AbbVie
Brief Summary

This is a global registry, to evaluate the long-term safety of Humira® in patients with moderate to severe polyarticular Juvenile Idiopathic Arthritis (JIA), that are treated as recommended in the Humira® product label. Patients treated with MTX will be considered a reference group. Patients will be followed in both the Humira® and Methotrexate (MTX) arms for 10 years from the enrollment date into one of the treatment arms.

Detailed Description

This registry will assess the incidence and rate of Humira (monotherapy or combination therapy with MTX) or MTX observational and treatment-emergent SAEs, Adverse Events of Special Interest (AESI) and Pregnancy in patients diagnosed with moderately to severely active polyarticular or polyarticular-course JIA through Year 5. From Year 6 through Year 10 SAEs, a subset of AESI that includes congestive heart failure (CHF), malignancies, AEs at least possibly related to and/or leading to discontinuation of registry treatment and pregnancies will be collected. For JIA patients 2 to\< 4 years of age in countries with available local approval for this group of patients at the time of consent to the registry, emergent AESI, SAEs and pregnancy (at the age when a patient can become pregnant) will be collected for the full 10 years. The approved age range for HUMIRA in the U.S., European Union (EU) and in Australia is 4 years of age and older, and recent approval in EU for JIA patients 2 to \< 4 years of age.

Patients who discontinue from the registry before 10 years will be offered to participate in the direct to Health Care Provider follow-up process, as allowed by local regulations.

Recruitment & Eligibility

Status
COMPLETED
Sex
All
Target Recruitment
849
Inclusion Criteria
  • For a patient enrolling into the HUMIRA® arm; a pediatric patient diagnosed at any time with moderately to severely active polyarticular or polyarticular-course JIA (defined as arthritis affecting >= 5 joints at the time of diagnosis of polyarticular or polyarticular-course JIA) who has been prescribed HUMIRA® therapy according to the local approved HUMIRA® product labeling and meets one of the following criteria:
  • Enrolled patients are 4 to 17 years of age as per approved HUMIRA® product label with the addition of JIA patients 2 to < 4 years of age in countries with available local approval for this group of patients at the time of consent to the registry.
  • Newly initiated (within 24 months of registry entry) on HUMIRA® therapy and has received continuous (no more than 70 consecutive days off drug) HUMIRA® therapy, and the physician can provide available source documentation of SAEs, AEs of Special Interest, and dosing information since initiation of therapy;
  • Or is entering after participation (within 24 months of registry entry or, if longer, continuously treated at the same site) in an AbbVie Humira sponsored study, regardless of age or the number of joints with symptoms of JIA, and has received continuous (no more than 70 consecutive days off drug) HUMIRA® therapy and the physician can provide available source documentation of SAEs, AEs of Special Interest, and dosing information since initiation of therapy.
  • For a patient enrolling into the MTX arm; a pediatric patient diagnosed at any time with moderately to severely active polyarticular or polyarticular-course JIA (defined as arthritis affecting >= 5 joints at the time of diagnosis of polyarticular or polyarticular-course JIA) who is prescribed MTX therapy alone or in combination with other disease modifying anti-rheumatic drugs (DMARDs) according to the local product labeling (initiated treatment within 24 months of registry entry) and has received continuous therapy and the physician can available provide source documentation of SAEs, AEs of Special Interest, and dosing information since initiation of therapy.
  • Patients who were treated in the MTX arm of this registry and prematurely discontinued from the MTX arm due to being a non-responder, or became intolerant of MTX treatment or are in need of combination treatment with HUMIRA® therapy may be eligible to enroll into the HUMIRA® treatment arm if all ongoing AEs/SAEs have been resolved, and they meet inclusion criteria and can enroll within the registry enrollment period. In case of ongoing AEs/SAEs at the time of the treatment arm switch, the AbbVie Designated Physician should be contacted to assess the eligibility of patient to roll into Humira treatment arm.
  • Parent or guardian has voluntarily signed and dated an informed consent/patient authorization form, approved by an Institutional Review Board (IRB)/Independent Ethics Committee (IEC) if applicable according to local law, after the nature of the registry has been explained and the patient's parent or legal guardian has had the opportunity to ask questions. Pediatric patients will be included in all discussions as per applicable local regulations in order to obtain verbal or written assent.
Exclusion Criteria
  • Patients should not be enrolled into the HUMIRA® or Methotrexate (MTX) arm if they cannot be prescribed and treated in accordance with the approved local HUMIRA® and/or with the local MTX product label
  • Patients should not be enrolled into the HUMIRA® or MTX arm if they require on-going treatment with Kineret® (anakinra), Orencia® (abatacept), Rituxan® (rituximab), Enbrel® (etanercept), and Remicade® (infliximab), or any other approved biologic agents or investigational agents.
  • Patients should not be enrolled into the MTX arm if they have had prior treatment with any investigational agent or anti-rheumatic biologic therapy such as, but not limited to, Orencia® (abatacept), Enbrel® (etanercept), Remicade® (infliximab), Rituxan® (rituximab), or Actemra® (tocilizumab)

Study & Design

Study Type
OBSERVATIONAL
Study Design
Not specified
Arm && Interventions
GroupInterventionDescription
HUMIRA® Treatment ArmadalimumabFor patients taking HUMIRA®
Methotrexate Treatment ArmMethotrexateFor patients taking Methotrexate
Primary Outcome Measures
NameTimeMethod
Incidence of Serious Adverse Events (SAEs)Up to 10 years

Collected as events occur during the registry and as part of prior clinical studies. Events are collected retrospectively for patients who dosed prior to enrollment in the registry and as part of the Health Care Provider (HCP) process.

Incidence of Adverse Events (AEs) of InterestUp to 10 years

Collected as events occur during the registry and as part of prior clinical studies. Events are collected retrospectively for patients who dosed prior to enrollment in the registry and as part of the Health Care Provider (HCP) process.

Secondary Outcome Measures
NameTimeMethod
Pediatric American College of Rheumatology (PedACR) 90Up to 10 years

Effectiveness data will be analyzed as observed and will be summarized for All Treated Patient Population.

Juvenile arthritis disease activity score (JADAS)Assessed in months 1,3, 6 and every 6 months through Year 5

Effectiveness data will be analyzed as observed and will be summarized for All Treated Patient Population. Is the total scores of four activity scales (Physician's Global Assessment of patient's disease, Parents' Global Assessment of patient's overall well-being, Number of active joints and Normalized erythrocyte sedimentation rate (ESR) if collected and available.

Physical function of the Disability Index of Childhood Health Assessment Questionnaire (DIHAQ)Assessed in months 1,3, 6 and every 6 months through Year 5

Effectiveness of therapy through clinical assessment.

Pediatric American College of Rheumatology (PedACR) 70Up to 10 years

Effectiveness data will be analyzed as observed and will be summarized for All Treated Patient Population.

Pediatric American College of Rheumatology (PedACR) - 30Up to 10 years

Effectiveness data will be analyzed as observed and will be summarized for All the Treated Patient Population.

Child Health Questionnaire (CHQ-PF50)Assessed in months 1,3, 6 and every 6 months through Year 5

The results will be summarized at each visit and will be used in exploratory analyses.

Pediatric American College of Rheumatology (PedACR) 50Up to 10 years

Effectiveness data will be analyzed as observed and will be summarized for All Treated Patient Population.

Trial Locations

Locations (92)

University of Louisville /ID# 23507

🇺🇸

Louisville, Kentucky, United States

Arthritis Care Spec. of MD /ID# 21961

🇺🇸

Ellicott City, Maryland, United States

North Shore University Hospital /ID# 21022

🇺🇸

New Hyde Park, New York, United States

University of Rochester Medical Center /ID# 20967

🇺🇸

Rochester, New York, United States

Ospedale Ss. Annunziata /ID# 37353

🇮🇹

Chieti, Italy

Akron Children's Hospital /ID# 22907

🇺🇸

Akron, Ohio, United States

Hospital Universitario Ramon y Cajal /ID# 41624

🇪🇸

Madrid, Spain

Hospital Universitario y Politecnico La Fe /ID# 37359

🇪🇸

Valencia, Spain

Hospital Universitario Vall d'Hebron /ID# 37357

🇪🇸

Barcelona, Spain

Children's Hospital Wisconsin - Milwaukee Campus /ID# 40226

🇺🇸

Milwaukee, Wisconsin, United States

Duplicate_Kepler Universitaetsklinikum GmbH /ID# 39068

🇦🇹

Linz, Oberoesterreich, Austria

Klinikum Dortmund gGmbH /ID# 44003

🇩🇪

Dortmund, Germany

Duplicate_AP-HP - Hopital Cochin /ID# 37345

🇫🇷

Paris, France

Revmatologicky ustav v Praze /ID# 43344

🇨🇿

Praha, Czechia

Universitaetsklinikum Tuebingen /ID# 39070

🇩🇪

Tubingen, Baden-Wuerttemberg, Germany

Klinikum St. Georg gGmbH /ID# 37349

🇩🇪

Leipzig, Germany

Children's National Medical Center /ID# 23506

🇺🇸

Washington, District of Columbia, United States

CHRU Nancy - Hopitaux de Brabois /ID# 25452

🇫🇷

Vandoeuvre-les-Nancy, Meurthe-et-Moselle, France

Helios Klinikum Berlin-Buch /ID# 37348

🇩🇪

Berlin, Germany

Duplicate_Universita di Catania /ID# 39075

🇮🇹

Catania, Italy

AP-HP - Hôpital Bicêtre /ID# 25443

🇫🇷

Le Kremlin Bicetre, France

Center Rheumatology Child&Adol /ID# 39069

🇩🇪

Garmisch-Patenkirchen, Germany

Rheumazentrum Wedel /ID# 37350

🇩🇪

Wedel, Germany

Fakultni Nemocnice Brno /ID# 37343

🇨🇿

Brno, Czechia

Hospital Universitario Severo Ochoa /ID# 41751

🇪🇸

Leganes, Madrid, Spain

Vseobecna fakultni nemocnice v Praze /ID# 47401

🇨🇿

Praha, Czechia

Fakultni Nemocnice v Motole /ID# 37342

🇨🇿

Praha, Czechia

Charite Universitaetsmedizin Berlin - Campus Mitte /ID# 41623

🇩🇪

Berlin, Germany

Hamburger Zentrum fuer Kinder- und Jugendrheumatologie /ID# 39223

🇩🇪

Hamburg, Germany

Klinikum Bremen Mitte /ID# 45942

🇩🇪

Bremen, Germany

Ann & Robert H Lurie Children's Hospital of Chicago /ID# 20966

🇺🇸

Chicago, Illinois, United States

Nationwide Children's Hospital /ID# 21963

🇺🇸

Columbus, Ohio, United States

Tufts Medical Center /ID# 21965

🇺🇸

Boston, Massachusetts, United States

Children's Hospital Los Angeles /ID# 24386

🇺🇸

Los Angeles, California, United States

Duplicate_Arthritis Associates South FL /ID# 17001

🇺🇸

Delray Beach, Florida, United States

The University of Chicago Medical Center /ID# 21981

🇺🇸

Chicago, Illinois, United States

Methodist Medical Group Rheum /ID# 46343

🇺🇸

Peoria, Illinois, United States

New York Medical College /ID# 21964

🇺🇸

Valhalla, New York, United States

Scott & White Health Care /ID# 36762

🇺🇸

Round Rock, Texas, United States

Seattle Children's Hospital /ID# 20968

🇺🇸

Seattle, Washington, United States

Duplicate_Womens and Childrens Hospital /ID# 59182

🇦🇺

Adelaide, South Australia, Australia

Duplicate_CHU de Rennes - Hospital Sud /ID# 27123

🇫🇷

Rennes, France

Orszagos Reumatologiai es Fizioterapias Intezet /ID# 95095

🇭🇺

Budapest, Hungary

Children's Hosp P. A. Kyriakou /ID# 25448

🇬🇷

Athens, Attiki, Greece

Hospital Infantil Universitario Nino Jesus /ID# 37360

🇪🇸

Madrid, Spain

Indiana University /ID# 11421

🇺🇸

Indianapolis, Indiana, United States

University of Cincinnati /ID# 14101

🇺🇸

Cincinnati, Ohio, United States

Duke Cancer Center /ID# 22904

🇺🇸

Durham, North Carolina, United States

Bone Spine Sports/Medctr One /ID# 21962

🇺🇸

Bismarck, North Dakota, United States

Duplicate_Rigshospitalet, Finsen Centre /ID# 25444

🇩🇰

Copenhagen, Denmark

Aarhus University Hospital /ID# 25445

🇩🇰

Aarhus N, Midtjylland, Denmark

Legacy Emanuel Medical Center /ID# 14102

🇺🇸

Portland, Oregon, United States

AZ Arthritis and Rheumotology Research, PLLC /ID# 21023

🇺🇸

Phoenix, Arizona, United States

University of Utah /ID# 21041

🇺🇸

Salt Lake City, Utah, United States

CHU Strasbourg - Hopital de Hautepierre /ID# 25450

🇫🇷

Strasbourg, Bas-Rhin, France

General Hospital of Thessaloniki Hippokrateio /ID# 25447

🇬🇷

Thessaloniki, Greece

Hospital Garcia de Orta, EPE /ID# 37355

🇵🇹

Almada, Portugal

Narodny ustav reumatickych chorob /ID# 38102

🇸🇰

Piestany, Slovakia

Arkansas Children's Hospital /ID# 23505

🇺🇸

Little Rock, Arkansas, United States

Duplicate_CHU Bordeaux - Hopital Pellegrin /ID# 25454

🇫🇷

Bordeaux, Gironde, France

Landeskrankenhaus Bregenz /ID# 26128

🇦🇹

Bregenz, Vorarlberg, Austria

Catalina Pointe Clinical Research /ID# 40227

🇺🇸

Tucson, Arizona, United States

Creighton Univ Med Ctr /ID# 11423

🇺🇸

Omaha, Nebraska, United States

Medizinische Universitaet Wien /ID# 26127

🇦🇹

Vienna, Wien, Austria

Debreceni Egyetem Klinikai Kozpont /ID# 95863

🇭🇺

Debrecen, Hajdu-Bihar, Hungary

Universitair Medisch Centrum Utrecht /ID# 48842

🇳🇱

Utrecht, Netherlands

Centro de Reumatologia Pediatrico de Puerto Rico /Id# 61047

🇵🇷

Bayamon, Puerto Rico

Arthritis Associates of Kingsport /ID# 44462

🇺🇸

Kingsport, Tennessee, United States

Centro Hospitalar Universitario do Porto, EPE - Hospital Santo Antonio /ID# 39081

🇵🇹

Porto, Portugal

St. Barnabas Ambulatory Care /ID# 21025

🇺🇸

West Orange, New Jersey, United States

Dr. Ramesh Gupta /ID# 45342

🇺🇸

Memphis, Tennessee, United States

CHU Toulouse /ID# 37347

🇫🇷

Toulouse, Occitanie, France

Hospital Sant Joan de Deu /ID# 37358

🇪🇸

Esplugues de Llobregat, Barcelona, Spain

Medizinische Universitaet Graz /ID# 26126

🇦🇹

Graz, Steiermark, Austria

CHRU Lille - Hopital Claude Huriez /ID# 25449

🇫🇷

Lille, Nord, France

Oslo Universitetssykehus, Radiumhospitalet /ID# 46402

🇳🇴

Oslo, Norway

Centro Hospitalar Universitario de Lisboa Norte, EPE - Hospital de Santa Maria /ID# 42682

🇵🇹

Lisboa, Portugal

Puerto Rico Children Hospital /ID# 47742

🇵🇷

Bayamon, Puerto Rico

Children's Speciality Center /ID# 11503

🇺🇸

Burlington, Vermont, United States

CHRU Tours - Hopital Bretonneau /ID# 27126

🇫🇷

Tours CEDEX 9, Indre-et-Loire, France

Azienda Ospedaliero Universitaria Meyer /ID# 26123

🇮🇹

Florence, Firenze, Italy

IRCCS Ospedale Pediatrico Bambino Gesu /ID# 39074

🇮🇹

Rome, Roma, Italy

Duplicate_Azienda Ospedaliera Spedali Civili /ID# 39077

🇮🇹

Brescia, Italy

Istituto Giannina Gaslini /ID# 26668

🇮🇹

Genova, Italy

Fondazione IRCCS Ca Granda Ospedale Maggiore Policlinico /ID# 26124

🇮🇹

Milan, Italy

Duplicate_Universita di Napoli Federico II /ID# 39078

🇮🇹

Naples, Italy

Azienda Ospedaliera Universitaria Federico II /ID# 39072

🇮🇹

Napoli, Italy

Fondazione IRCCS Policlinico /ID# 39076

🇮🇹

Pavia, Italy

Queen Silvia Children's Hosp /ID# 26125

🇸🇪

Gothenburg, Vastra Gotalands Lan, Sweden

AP-HP - Hopital Necker /ID# 25442

🇫🇷

Paris, France

Asklepios Klinik Sankt Augustin /ID# 41622

🇩🇪

Sankt Augustin, Germany

St. Christopher's Hospital /ID# 24385

🇺🇸

Philadelphia, Pennsylvania, United States

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