Tenosynovial Giant Cell Tumors (TGCT) Observational Platform Project

NCT ID: NCT02948088

Last Updated: 2023-10-31

Study Results

Results available

Outcome measurements, participant flow, baseline characteristics, and adverse events have been published for this study.

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Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

183 participants

Study Classification

OBSERVATIONAL

Study Start Date

2016-11-18

Study Completion Date

2021-03-11

Brief Summary

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TGCT is a rare disease that is difficult to manage, surgical resection is the primary treatment currently available. To date no disease registry exists and there is little data available detailing the management of patients with diffuse TGCT (d-TGCT), the burden of d-TGCT for patients (including pain, joint stiffness, swelling, reduced mobility and quality of life) or the economic impact of d-TGCT.

This study aims to collect data by an observational disease registry involving no intervention to the patient or changes to investigators treatment decisions.

Detailed Description

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GCT is a rare, benign, but potentially locally aggressive and recurrent disease. Treatment pattern and treatment initiation, continuation or changes are solely at the discretion of the physician and the patient.

There will be no attempt to influence the prescribing patterns of any individual treating physician. All medication will be prescribed in the usual standard of care and will not be provided by the study sponsor.

Participation in the study will in no way influence payment or reimbursement for any treatment received by patients during the study.

It is the responsibility of the investigator and his study staff to enter all relevant patient data required for this registry in the electronic Case Report Form (eCRF) and in the patients' medical records.

Approximately 15 sites from up to 6 European Countries (France, Germany, Italy, The Netherlands, Spain and United Kingdom) and 4 sites from the US are planned to participate. The sites will be specialized sites that treat d-TGCT regularly.

Conditions

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Giant Cell Tumors

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Eligibility Criteria

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Inclusion Criteria

* Written informed consent for participation in the study (ICF)
* Patients with d-TGCT (diagnosed histologically) confirmed naïve or recurrent case
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Optimapharm

INDUSTRY

Sponsor Role collaborator

Daiichi Sankyo

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Global Clinical Leader

Role: STUDY_DIRECTOR

Daiichi Sankyo

Locations

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David Geffen School of Medicine at UCLA

Los Angeles, California, United States

Site Status

University of California San Francisco

San Francisco, California, United States

Site Status

Memorial Sloan Kettering Cancer Center

New York, New York, United States

Site Status

University of Texas MD Anderson Cancer Center

Houston, Texas, United States

Site Status

Medizinische Universität Graz

Graz, , Austria

Site Status

CHU Nantes

Nantes, , France

Site Status

Westdeutsches Tumorzentrum

Essen, , Germany

Site Status

Istituto Ortopedico Rizzoli

Bologna, , Italy

Site Status

Istituto Nazionale Tumori-Foundazione IRCCS

Milan, , Italy

Site Status

Leiden University Medical Center

Leiden, , Netherlands

Site Status

Radboud universitair medisch centrum

Nijmegen, , Netherlands

Site Status

Hospital Sant Pau

Barcelona, , Spain

Site Status

Hospital Universitario Virgen del Rocio

Seville, , Spain

Site Status

The Royal Marsden Hospital

London, , United Kingdom

Site Status

Nuffield Orthopaedic Centre

Oxford, , United Kingdom

Site Status

Countries

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United States Austria France Germany Italy Netherlands Spain United Kingdom

References

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Palmerini E, Healey JH, Bernthal NM, Bauer S, Schreuder H, Leithner A, Martin-Broto J, Gouin F, Lopez-Bastida J, Gelderblom H, Staals EL, Mercier F, Laeis P, Ye X, van de Sande M. Tenosynovial Giant Cell Tumor Observational Platform Project (TOPP) Registry: A 2-Year Analysis of Patient-Reported Outcomes and Treatment Strategies. Oncologist. 2023 Jun 2;28(6):e425-e435. doi: 10.1093/oncolo/oyad011.

Reference Type DERIVED
PMID: 36869793 (View on PubMed)

Bernthal NM, Spierenburg G, Healey JH, Palmerini E, Bauer S; TOPP Study Group; Gelderblom H, Staals EL, Lopez-Bastida J, Fronk EM, Ye X, Laeis P, van de Sande MAJ. The diffuse-type tenosynovial giant cell tumor (dt-TGCT) patient journey: a prospective multicenter study. Orphanet J Rare Dis. 2021 Apr 29;16(1):191. doi: 10.1186/s13023-021-01820-6.

Reference Type DERIVED
PMID: 33926503 (View on PubMed)

Provided Documents

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Document Type: Study Protocol and Statistical Analysis Plan

View Document

Other Identifiers

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DS-ONC-01-15-EU

Identifier Type: -

Identifier Source: org_study_id

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