The Registry
The goals of the registry are to generate real-world evidence of long-term outcomes after pancreatic surgery to gain a broader understanding of the implications of treatment variations on outcomes and disease course.
The registry findings will guide and facilitate future research efforts led by the PANC-PALS consortium.
The registry will capture all adult patients undergoing pancreatic resections for any indication, both retrospectively from 2014 to date and prospectively thereafter.
Each center will have full control over their own data. Centers will be able to access their own data freely from the electronic data capture platform directly at any time. The use of each centre's data for specific research studies will require explicit consent. Registry participation is free of charge.
2014 Retrospective Data
2024
Prospective Data
PANC-PALS Registry Launch
Steps to join
01
Access the
02
How many pancreatic resections are performed at your center per year?
Registry recruitment will be at hospital level; otherwise referred to as pancreatic surgery centers. Eligible centers will be very high-volume pancreatic surgery centers from any nation worldwide. We define a very high-volume pancreatic surgery center as a medical institution or hospital performing a minimum of 100 pancreatic resections per year including all types of pancreatic resections combined, for all diagnoses.
03
Identify your site PI and two co-investigators
We advise the local site PI be an attending/consultant surgeon to represent your center in the PANC-PALS consortium scientific committee.
04
Take our registration survey to join
We are curious to know more about your center and daily practice. The survey takes less than 3 minutes to complete.
05
Obtain local IRB approval and establish data transfer agreements
Local IRB approval will be required from every center. We will provide assistance in the process. Following your local regulations we will assist with the waiver of consent or formal consent. Finally, data transfer agreements between the PANC-PALS central hub at NYULH and your own center will need to be established.
06
Receive your unique Kerberos ID
This will give you access to the REDCap electronic Case Report Form (eCRF) to start data abstraction.
Do you think your team will benefit from data abstraction training?
The PANC-PALS Registry Data Flow
