Lobbying for Data Flows & PDAC Exceptionalism
With a deadly disease like pancreatic cancer, unimpeded flows of datasets across transnational sites and easing the burden of regulatory compliance are, literally, a life-saving necessity.
To the special attention of PDAC Scientists, PDAC Advocacies and to the Patients
In the Trans-Atlantic Pancreatic Cancer Alliance (TAPCA) there is a concern across the board:
The current regulatory framework for sharing biosamples and associated data presents significant challenges for PDAC investigators. While TAPCA unambiguously supports safety standards and ethical requirements in cancer research, these challenges often slow down progress of joint research efforts and not always align with the Patients’ best interest. This is particularly true for pancreatic cancer and its ‘Exceptionalism’. Prior to proceeding further, we encourage all PDAC investigators to take a moment to view the following brief video:
‘PDAC EXCEPTIONALISM:
The Case for Regulatory Reform’
A balance must be achieved between data dissemination and data security. However, some excessive administrative procedures frequently impede the efficient exchange of clinical data, delay trial activation, and render the research process unnecessarily slow and complex.
TAPCA’s efforts in this regard were fostered by its German members who have designed a software platform allowing the sharing of samples and meta-data across all institutions through a dedicated repository platform [recommended, please contact Marion Drechsel m.drechsel@dkfz-heidelberg.de]. But more is needed.
Crucially, solving these issues requires a vocal joint effort with Patient Advocacies, Clinicians, Researchers and with the Patients themselves to demand that PDAC data availability and regulatory compliance be eased and streamlined by Policymakers and Regulators. In particular we invite Patients and their Advocates to watch the ‘Patients can Act’ video in this page.
‘Patients can Act’
Let’s join forces in launching TAPCA’s public
D.A.T.A.S.E.T.S. Lobbying Campaign
(Data Availability To All Scientists Enhances Treatment Success)
Please reach out to us by contacting Dott. Paolo Rossi Barnard