8 July 2014, SURF Utrecht
12:30 – 17:00
This DTL focus meeting will discuss how to make efficient use of electronic patient records for research purposes within the legal boundaries imposed by patient privacy regulations. Currently, data capture for clinical studies and registries tend to be fully manually, basically duplicating the data registration efforts already completed for clinical care of the patient. The DTL focus meeting highlights the difficulties met in practice by clinical investigators who try to deal with this problem, and subsequently zooms in on a number of ongoing initiatives to establish automated data links between clinical care and clinical research.
In the subsequent discussion we will try to generalize these initiatives in order to arrive at a blueprint for a future national clinical data registration pipeline under the responsibilities of the joint Dutch UMCs (the NFU), as one of the cornerstones for the new national programme of the UMCs to build a shared research data infrastructure.
|12:30 – 13:00||Coffee and tea|
|13:00 – 13:20||Welcome & introduction NFU data stewardship initiative.|
|13:20 – 13:55||Marc Besselink (AMC) – Clinical research in practice:
how do I get my data?
|13:55 – 14:30||Robert Veen (UMCU) – Ongoing initiatives to establish|
|14:30 – 14:45||Coffee/tea break|
|14:45 – 15:20||Peter Huijgens (IKNL) – How are clinical registries
extracting their data?
|15:20 – 15:55||Gert-Jan Borghuis (RadboudUMC) – How are things
coordinated at this moment?
|15:55 – 16:30||Discussion|
|16:30 – 17:00||Evaluation & closing|
Contact person for the focus meeting: Jan-Willem Boiten, CTMM-TraIT
Focus meetings are a series of meetings on diverse topics, organized by the Dutch Techcentre for Life Sciences (DTL).