Am I a candidate for surveillance of the pancreas?

Because the different participating centers have their own specific surveillance protocols, this depends on the criteria designed by your local hospital. In general, only those individuals with highest inherited risk are eligible for surveillance. This depends on the type of mutation/clinical syndrome and family history. For more information, please enquire with your treating physician.

How can I participate?

For more information on entering a surveillance program, please consult your treating physician at your local hospital.

If you are already participating in a surveillance program and you wish to participate in this registry, you will need to give written informed consent for the sharing of your anonymized data to your treating physician/local investigator. No further actions are required of you.

What are the risks of participation?

As participant of this 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.

Am I insured if I participate?

As participant of this 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.

What are the benefits of participation?

There are no individual benefits for participants of this registry. However, by participating in this 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.

Is my information treated confidentially?

Yes, all your information will be stored in an anonymous database, it will not be retraceable to you. The treating physicians from your local hospital are the only ones with access to your non-anonymous information. Researchers from other participating centers do not have this access.

Where can I find more detailed patient information?

More information can be found in the patient information brochures. If available for your hospital, it can be found on the downloads page.

What are my local hospital’s specific procedures?

For the details of your local hospital’s surveillance procedures, please contact your treating physician/local investigator.

How can I contact my physician or investigator?

The contact information for each participating center can be found on the contact page.