Background

Various centers around the world are currently investigating the feasibility and yield of screening and surveillance for pancreatic cancer in high-risk individuals.

Evidence is beginning to accumulate that surveillance may lead to the early detection of non-invasive precursor lesions and asymptomatic early stage pancreatic cancer.

Ultimately, the goal of surveillance is to reduce mortality in these high-risk individuals.

Consortium

Many research questions need to be answered to confirm the feasibility and yield of screening and surveillance in high-risk individuals and to develop evidence-based surveillance protocols. For this, large cohorts are needed, but the numbers of high-risk individuals in each separate surveillance facility are too small.

The ‘CAncer of the Pancreas Surveillance’ (CAPS) consortium is a unique collaboration, created to pool data from different centers. It organizes and facilitates research on surveillance for pancreatic cancer in high-risk individuals on a global scale.

The key characteristics of the CAPS consortium are:
– No internal competition but collaboration based on trust
– Joint discussions of study protocols
– An open, approachable atmosphere of communication
– A multidisciplinary collaboration

Registry

Design
This international multicenter observational registry is designed to collect data, assembled in the setting of either clinical care or research programs.

Population
Eligible are all high-risk individuals who are under surveillance for pancreatic cancer. Participating centers can employ their own in- and exclusion criteria.

Methods
The CAPS registry enables clinicians to easily record data in an online eCRF. Data is saved in an anonymized database, which clinicians can access to review or update their own collected information.

Surveillance strategies are individually determined by each participating center. The CAPS consortium guidelines (Canto et al., Gut, 2013, see downloads) can provide guidance regarding who to screen, when to start, which modalities can be used, and how to manage the findings. The revised Sendai guidelines (Pancreatology, 2012) offer guidelines for the follow-up strategy of pancreatic cystic lesions.

The eCRF contains questions regarding

  • Demographics
  • Detection techniques
  • Surveillance results
  • Interventions and pathology findings
  • Follow-up, outcome, complications and unexpected events
  • A video presentation of the eCRF can be found on the home page.

Benefits of joining the CAPS registry

  • Easy data collection by eCRF in minutes
  • Maintain complete freedom to determine your own strategies
  • Receive reminders regarding follow-up dates
  • Obtain open access to your collected data
  • Be acknowledged as (co-)author in future publications, depending on your level of involvement

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