Instructions
If you were already given a username and password skip this step. Otherwise sign up here.
If you have any questions concerning the sign-up process or the log in credentials please contact our data manager Julia Ruppel.
Julia Ruppel
Data Management Visceral Surgery
Tel.: +41 61 7777445
Mail: Julia.ruppel@clarunis.ch
Sign up
Pancreas Center (Name, Location, Address).
Average amount of patients with newly diagnosed PDAC/year.
Average amount of PDAC operations/year.
Contact (Name of local study supervisor, email address)
Submitting
- Start by submitting your “CENTER VARIABLES”. This information will be linked to your individual center (via your login and “center-identification-code” and only must be submitted once. Afterwards you can start submitting your individual cases:
- For each patient that meets the inclusion criteria, begin by filling in the “INDIVIDUAL PATIENT VARIABLES”. They also only have to be submitted once per patient.
- As soon as your patient’s case is discussed in his/her first MDTB, simply click on the tab “first MDTB” and type in the data from top to bottom. Every variable is briefly explained next to the input box.
- Some variables can only be submitted in a predetermined format (for example dates only in dd.mm.yyyy). If so, the given format is explained next to the input box.
- Some variables are conditional. For example: The R-Status is only needed, if the patient received surgery, meaning that if the treatment-variable “surgery” wasn’t chosen, the R-Status will not be asked.
- When the patient is seen again in his second MDTB, simply continue by clicking “second MDTB”.
- Information on individual therapy procedures is requested under the “Therapy associated data” tab. This can be entered at any time (even after the nine-month period), as some of those variables are not yet available at the time of the tumor board.
FAQs
What is it about?
The aim of this study is to give a representation of the management of patients in multidisciplinary TBs with newly diagnosed PDAC covering information about their individually tailored treatment
Who can join?
Any certified pancreas center, that regularly implements MDTBs.
When does it start? What is the time frame?
Start of the study will be the 01.02.2025 but recruiting start individually for each center. Centers will recruit over a period of three months. Individual follow-up will cover nine months per patient.
Why should we join?
Great exchange, flexible time frame, open-access website, guaranteed authorship according to number of patients contributed.
Who else is taking part?
It is an international, multicenter prospective study with participants worldwide.
More than 50 centers have already pledged to join, rising continuously.
How is the data collected?
Via this open access website. After signing up, you will get a username and password. Log in to submit your cases. Press here to start and simply follow the steps one by one.
We use a different staging system than the NCCN – can we still participate?
Of course! We include many different similar staging systems such as MD Anderson, ISGPS, DPCG, JPS and ESMO and many more. The only condition is, that they can be transferred into comparable therapeutic categories (i.e. upfront resectable, borderline resectable, locally advanced (…)).
Is it time-consuming?
We try to minimize the workload for participating centers as much as possible! The open-website questionnaire is broken down to only the most relevant facts, allowing you to save time by choosing from a thought-through pre-selection or a simply drop-down menu. You can submit a case while it being discussed in a MDTB, meaning no extra work for you!
This FAQ doesn’t answer my questions. Who can I contact?
Simply send us a quick email with your questions under info@outcome4pancreaticcancer.com. Happy to help!
What are center variables?
Center variables are baseline characteristics that are uniform for each patient submitted by the center. That’s why they only have to be submitted once! We can identify your center variables through the individual center-identification-code.
What is a center-identification-code?
The center-identification-code is a unique identifier that is assigned to each center and allows us to link each patient to your center and the center variables, so you don’t have to submit them over and over again, but once only once!
What is treatment-related data, and when do I submit it?
Treatment-related data revers to information on individual therapy procedures and is requested under the “Therapy associated data” tab. It includes variables like the cumulative Gray dosage (if radiotherapy was administrated) or the R-status (if the patient received surgery). It can be entered at any time (even after the six-month period), as some of those variables are not yet available at the time of the tumor board.
What is a conditional variable?
Some variables are conditional, that means they are only queried, if you have answered previous questions in a specific way. For example: The R-Status is only needed, if the patient received surgery, meaning that if the treatment-variable “surgery” wasn’t chosen, the R-Status will not be asked.
I can’t type in a variable. What could be the reason?
Some input boxes only allow variables in a certain format due to international comparability such as dates, lab results or dosages. If so, the predetermined format is shown next to the input box.