Aim of the registry

Currently, surveillance for pancreatic cancer in the general population is not recommended, because the disease is so rare. However, some individuals seem to be at higher risk, for instance those with a family history of pancreatic cancer or a particular genetic background. All over the world, hospitals are studying the possibilities of screening and surveillance for pancreatic cancer in those individuals with highest risk. However, large numbers are needed to prove effectiveness. The CAPS registry aims to globally bundle results, in order to answer important research questions and develop evidence-based surveillance protocols.

Procedures

Each participating center designs and executes their own surveillance protocol with specific study procedures. Participating in the CAPS registry does not involve additional procedures, rules or limitations. The effectiveness of a surveillance program and the best way to perform surveillance are still under investigation. Therefore, small differences in the study procedures may exist between the different participating centers. For example, differences in the used diagnostic tests or the intervals between visits. One of the aims of the CAPS registry is to investigate these differences, so that surveillance programs can be optimized. For more information about the specific study procedures, please enquire at your local hospital.

Risk and insurance

As participant of the CAPS registry, you will not be exposed to specific risks. This registry only records the outcome of the surveillance program, designed and executed by your local hospital. Therefore, our ethical review board does not require additional insurance. For information about the risks and insurance of your local hospital’s surveillance program, please enquire at your local hospital.

Benefits

There are no individual benefits for participants of this registry. However, by participating in the CAPS registry, it is possible to contribute to answering important research questions and the development of evidence-based surveillance protocols. This, in turn, will benefit all individuals at high risk for the development of pancreatic cancer who will enter a surveillance program in the future, for example younger family members.

Participating centers and investigators

Null Erasmus University Medical Center,
Rotterdam, The Netherlands
Prof. dr. Marco J. Bruno, MD, PhD
Assistant Prof. dr. Djuna L. Cahen, MD, PhD
Dr. Jan-Werner Poley, MD, PhD
Drs. Kasper A. Overbeek, MD
Drs. Iris Levink, MD
Drs. Brechtje D. Koopmann, MD
Null Johns Hopkins Hospital,
Baltimore, USA
Prof. dr. Marcia I. Canto, MD, MHS
Prof. dr. Michael G. Goggins, MD
Null Academic Medical Center,
Amsterdam, The Netherlands
Prof. dr. Paul Fockens, MD, PhD
Associate Prof. dr. Jeanin E. Van Hooft, MD, PhD, MBA
Drs. Kasper A. Overbeek, MD
Drs. Brechtje D. Koopmann, MD
Null University Medical Center Utrecht,
Utrecht, The Netherlands
Dr. Margreet G.E.M. Ausems, MD, PhD
Prof. Dr. Frank P. Vleggaar, MD, PhD
Null University Medical Center Groningen, Groningen, The Netherlands
Dr. Hendrik M. Van Dullemen, MD, PhD
Null University of Verona,
Verona, Italy

Drs. Salvatore Paiella, MD
Dr. Giuseppe Malleo, MD, PhD
Washington University Medical Center
St. Louis, USA

Dr. Dayna Early, MD
Thomas Hollander, RN, MS, BSN, CCRP
Mayo Clinic Florida
Jacksonville, USA

Prof. Dr. Michael Wallace, MD
Dr. Pujan Kandel, MD
  Dana Farber Cancer Institute
Boston, USA

Dr. Sapna Syngal, MD, MPH
Dr. John Saltzman, MD
Tara Dhingra, MHS
Medical College of Wisconsin
Milwaukee, USA
Associate Prof. dr. Susan Tsai, MD, MHS
Dr. Jennifer Geurts, MS, CGC
Dr. Chad Barnes, MD
Dr. Idayat Akinola, MD, MPH
University of Colorado Denver Hospital
Aurora, USA

Associate Prof. dr. Cheryl Meguid, DNP, ACNP
Dr. Brian Bauer, MD
St. Vincent’s Hospital Sydney
Dr. David Williams, MBBS, FRACP
Dr. Alina Stoita, MBBS, FRACP
Tanya Dwarte, clinical research coordinator
University of Pittsburgh Medical Center
Dr. Randall Brand, MD
University of Michigan
Assistant Prof. dr. Elena Stoffel, MD
Erika Skoeppe, MS
The Maria Sklodowska-Curie Memorial Cancer Centre
Dr. Marcin Polkowski, MD
Beaujon Hospital
Dr. Vinciane Rebours, MD
Dr. Louis de Mestier, MD