TAPCA Action Items

Action Item 1:
PDAC EXCEPTIONALISM

With regard to our priorities of reducing excessive regulatory burden in pancreatic cancer research, accelerating data flows, and advancing PDAC EXCEPTIONALISM, please find below a proposed five-step action plan set out in the attached PDF document.

Action Item 2:
Creating the World’s Largest Patients’ Registry in PDAC.

With more stratification and more (molecular) targeted therapies and interventions, the process of finding the right PDAC treatment for the right Patient has become more complex. It’s the mighty challenge of personalised medicine.

The importance of Patients information being linked to available treatments, trials and other supportive programs is still a challenge in the field of pancreatic cancer. With more complex and targeted treatments improving Patient care for selected subgroups, the allocation of Patients to specific therapies and programs is increasingly difficult, but it is also vital to improve their treatment outcomes.

It must be understood that the utilization of the largest possible network of Patients with PDAC willing to register under TAPCA’s umbrella is fundamental, primarily to significantly speed up our clinical trials leading to much needed novel therapeutics.

Thus, TAPCA investigators will endeavour to build the World’s Largest Patients Registry in PDAC in full compliance with privacy and data sharing rules, envisioning it as a turning point in the fight against pancreatic cancer in cooperation with Patients Advocacies, General Practitioners, the Patients and their families.

Action item: A key preliminary step in implementing such an initiative would be the convening of a dedicated multidisciplinary forum of TAPCA experts with experience in the legal, ethical, and regulatory barriers surrounding the collection, governance, and cross-institutional use of patient data and medical records. To organise this discussion forum, please contact TAPCA founder and coordinator, Dott. Paolo Rossi Barnard