Abstract
Abstract Background Technological innovations have contributed to rapid changes in translational research, allowing greater amounts of shared data on an unprecedented scale. However, methods for involving patients in research have not kept pace with changes in research capacity. Modern tools offering more flexibility in the management of patient consent are needed. The CARPEM-LYNCH program aims to explore the acceptance and feasibility of the concept of dynamic informed consent. It is a pilot program to test a research platform at the interface between hospital follow-up clinical data and data provided by patients through the NutriNet-Santé e-cohort platform. Methods Patients diagnosed with Lynch Syndrome followed at the European hospital Georges Pompidou (HEGP) are recruited and followed-up within the NutriNet-Santé online platform. In addition to generic NutriNet questionnaires (very detailed data on diet, physical activity, lifestyle, etc.), participants receive specific questionnaires related to their syndrome, perception of nutritional risk factors, and quality of life. Clinical data collected during standard hospital care will be linked to NutriNet data for participants who provide a dynamic consent. This dispositive will allow to investigate multiple dimensions of dietary behaviors and their health impact in these at-risk patients. Results The pilot phase has started. The first 20 patients have been included, showing good acceptance of the dynamic consent. Qualitative analysis of their responses is ongoing to optimize tools before large-scale deployment and extension to other hospital centers. Conclusions This experience of merging hospital and e-cohort data through dynamic consent to advance knowledge on health impact of diet and lifestyle in Lynch patients opens up a multitude of perspectives. Key messages Dynamic informed consent offers opportunities for data sharing between clinicians, researchers and patients with a promising impact on translational research. Dynamic informed consent can provide practical and sustainable solutions to the challenges of recruiting and retaining participants, managing consent and it can also be a source of economic efficiency.
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