PROMOTION Registry | Fondazione Gimema
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PROMOTION Registry
Patient-Reported Outcomes Measurements Over Time IONcology

PROMOTION Registry
Patient-Reported Outcomes Measurements Over Time IONcology

PROMOTION Registry
Patient-Reported Outcomes Measurements Over Time IONcology

About the PROMOTION Registry

The PROMOTION database is a registry of all cancer Randomized Controlled Trials (RCTs) with a Patient-Reported Outcome (PRO) endpoint published since 2004. The PROMOTION database now contains more than 700 PRO-RCTs conducted across a wide range of cancer specialties that have enrolled, overall, more than a quarter of a million of patients (see database content).

 

This is a large international initiative involving several key experts in quality of life and PRO research in oncology and is lead by Dr. Fabio Efficace, Head of the Health Outcomes Research Unit of the GIMEMA Foundation. This project started on April 2012 and it was financially supported by the GIMEMA and by the EORTC Quality of Life Group. The Project also relies on the guidance and great expertise of worldwide experts, acting as Advisory Board members, and on an international network of dedicated Co-Investigators involved at different levels in the project, for example, identification of eligible studies for inclusion in the PROMOTION Registry, study evaluation, data collection and analyses.

 

The PROMOTION database contains several information regarding, for example, the PRO assessment methodology, the statistical design and the reported clinical and PRO results of RCTs. Such information is systematically collected and electronically archived into a password protected database. Typical data contained in the Registry are related, for example to: type of PRO instruments used, information regarding clinical significance of quality of life outcomes or details regarding the statistical approaches used to address missing quality of life data. A standardized working methodology is used and evaluation of studies that populate the database is performed using a common set of criteria across all cancer disease sites, thus allowing comparisons across all cancer areas.

 

Quality of life and other types of PROs are now frequently included as endpoints in cancer clinical trials. However, assessing PROs requires making a number of challenging decisions with regard to, for example, data collection, appropriate timing of assessment, adequate statistical analysis as well as outcome interpretation. Inadequate or poorly designed and reported PROs investigations in the context of RCTs, can mislead clinical decision making as it hampers a clear appraisal of the validity of the outcomes. Cancer patients, physicians and health policy makers should rely on the most solid evidence to make informed decisions. Therefore, providing the scientific community with high quality data in this area is of paramount importance. The PROMOTION Registry was thus developed to be a source of information to possibly answer a number of research questions revolving around the use and the added value of PROs assessment in cancer clinical trials. Several collaborations are now ongoing with a number of Universities and research groups dedicated to quality of life and PRO research in oncology and we welcome proposals for collaborations in this area.

PROJECT TEAM

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Principal Investigator, Fabio Efficace

Head, Health Outcomes Research Unit, Italian Group for Adult Hematologic Diseases (GIMEMA); Chairman, Working Party Quality of Life GIMEMA, Rome, Italy.

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Executive Advisory Board

Neil K. Aaronson

Head, Department of Psychosocial Research, Division of Psychosocial Research & Epidemiology, The Netherlands Cancer Institute & Professor, Department of Clinical Psychology, The University of Amsterdam, Amsterdam, The Netherlands.

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Jane Blazeby

Professor of Surgery, University of Bristol, Bristol, United Kingdom (UK).

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Peter Fayers

Emeritus Professor of Medical Statistics, University of Aberdeen, UK; Professor, European Palliative Care Research Centre (PRC), Norwegian University of Science and Technology, Trondheim, Norway.

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Andrea Pusic

Associate Professor, Plastic and Reconstructive Surgery Memorial Sloan-Kettering Cancer Center and Cornell-Weill Medical Center, New York, USA.

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Mirjam Sprangers

Professor, Department of Medical Psychology, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.

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Francesco Cottone

Senior statistician, Health Outcomes Research Unit, GIMEMA
Statistical Advisor for the PROMOTION Registry

E-Mail: promotion@gimema.it

Francesco Cottone supports the PROMOTION team in the statistical analyses and preparation of statistical reports of data contained in the PROMOTION Registry database.

He also assists PROMOTION team members in making decisions about the most appropriate statistical methods to use to address a specific research question.

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Francesco Sparano

Data manager, Health Outcomes Research Unit, GIMEMA
Project manager for the PROMOTION Registry
E-Mail: promotion@gimema.it

Francesco Sparano supports the Principal Investigator in all aspects of the project to ensure compliance with standard operating procedures and to ensure accuracy, completeness and proper usage of the PROMOTION Database. He is also responsible for checking data quality, coordinating the overall activities and communication amongst all collaborators from participating Institutions.

Michael Feuerstein

Lenox Hill Hospital, Department of Urology, New York, USA

Yeliz Cemal

Memorial Sloan-Kettering Cancer Center, Department of Surgery, New York, USA

Daniel Fish

Memorial Sloan-Kettering Cancer Center, Department of Surgery, New York, USA

Jane Yanagawa

David Geffen School of Medicine at UCLA, Department of Surgery, Los Angeles, USA

Sarah Fuzesi

Memorial Sloan-Kettering Cancer Center, Department of Surgery, New York, USA

Mike Pezold

Memorial Sloan-Kettering Cancer Center, Department of Surgery, New York, USA

Jon Yeung

Memorial Sloan-Kettering Cancer Center, Department of Surgery, New York, USA

Alissa Haas

Indiana University Bloomington, Bloomington, USA

Sumit Isharwal

Memorial Sloan-Kettering Cancer Center, Department of Surgery, New York, USA

Lisa M. Wu

Northwestern University Feinberg School of Medicine, Chicago, USA

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Marc Jacobs

Academic Medical Center/University of Amsterdam, Department of Medical Psychology, Amsterdam, The Netherlands

Jacobien Kieffer

The Netherlands Cancer Institute, Division of Psychosocial Research & Epidemiology, Amsterdam, The Netherlands

Jane Yanagawa

Department of Neurology, VU University Medical Center, Amsterdam, the Netherlands

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Jonathan Rees

School of Social and Community Medicine, University of Bristol, Bristol, UK

Katie Whale

School of Social and Community Medicine, University of Bristol, Bristol, UK

Alexandra Gilbert

Leeds Institute of Cancer Studies and Pathology, University of Leeds, Leeds, UK

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Laura Cannella

Data Center and Health Outcomes Research Unit, Italian Group for Adult Hematologic  Diseases(GIMEMA), Rome, Italy

Edoardo La Sala

Data Center and Health Outcomes Research Unit, Italian Group for Adult Hematologic  Diseases(GIMEMA), Rome, Italy

Alfonso Piciocchi

Data Center and Health Outcomes Research Unit, Italian Group for Adult Hematologic  Diseases(GIMEMA), Rome, Italy

Valentina Cafaro

European University of Rome, Rome, Italy

Nina Deliu

Data Center and Health Outcomes Research Unit, Italian Group for Adult Hematologic  Diseases(GIMEMA), Rome, Italy

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Marika Rasschaert

Multidisciplinary Oncology Center Antwerp (MOCA), Antwerp University Hospital, Antwerp, Belgium

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Madeleine King

Quality of Life Office, Psycho-oncology Cooperative Research Group (PoCoG), School of Psychology, The University of Sydney, Sydney, Australia

Rebecca Mercieca-Bebber

Quality of Life Office, Psycho-oncology Cooperative Research Group (PoCoG), School of Psychology, The University of Sydney, Sydney, Australia

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Chonghua Wan

Guangdong Medical University, School of humanities and management, Dongguan, PR China

Wennang Wang

Guangdong Medical University, School of humanities and management, Dongguan, PR China

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Amélie Anota

Methodology and Quality of Life in Oncology Unit, University Hospital of Besançon, Besançon, France

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