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The NeuroCure Clinical Research Center (NCRC) with its embedded BrainLab module aims to translate preclinical NeuroCure research into proof-of-concept studies in humans. In cooperation with BIH QUEST Center, the NCRC introduces and implements two novel complementary structural elements in the BrainLab project, Patient & Stakeholder Engagement (PSE) and Clinical Research Data Management (cRDM), called “PSE@NCRC and cRDM@NCRC: Keeping NeuroCure at the forefront of responsible translational neuroscience”. Funding of these two projects is granted by NeuroCure.

Patient & Stakeholder Engagement (PSE) @NCRC

Active involvement of patients in the research process can increase the quality of research and relevance for patients and can thus increase translational success. Co-developing research protocols together with patients can also increase recruitment into clinical trials. PSE@NCRC serves as a matchmaking structure to bring together researchers and patients. We develop methods and materials to actively engage specific patient groups and share them with the NC and NCRC research community. In addition, we offer funding to NC researchers who wish to implement PSE measures into their studies.

The newly established services and training programs are disseminated within NC and NCRC. Additionally, we offer presentations and trainings on patient engagement to interested research groups. Workshops and public events will realize communication between researchers and patients/patient organizations. Results of co-created projects will be published – in addition to scientific publications – on channels preferred by patient organisations such as flyers, podcasts, and websites.

Funded proposals

Prof. Dr. Matthias Endres & Dr. med. Alexander Heinrich Nave, Department of Neurology with Experimental Neurology, Charité – Universitätsmedizin Berlin, Project: Patient engagement in “Rehabilitation and Clinical Observation of stroke patients to validate prognostic factors of functional and subjective Recovery after Stroke (RECOVER-S): A registry-based cohort study.”

Laura Göschel, NeuroCure Clinical Research Center NCRC, Charité – Universitätsmedizin BerlinProject: Patient engagement in the NeuroMET2 Project

Dr. med. Maike Stein, Department of Neurology with Experimental Neurology and NeuroCure Clinical Research Center NCRC, Charité – Universitätsmedizin Berlin, Project: MyaLink - first field user experience for further development of patient-centric smartphone app and planning of multicentric interventional study

Prof. Dr. med. Dr. phil. Andreas Heinz, Department of Psychiatry and Psychotherapy (CCM) and NeuroCure Clinical Research Center NCRC, Charité – Universitätsmedizin Berlin, Project: Development of a PROMIS Item Bank to Design Targeted Interventions in Psychosis: A Participatory Research

Dr. Lucia K. Feldmann & Dr. Jeroen Habets, research group Prof. Kühn, Department of Neurology with Experimental Neurology, Charité – Universitätsmedizin Berlin, Project: Long-term monitoring of biomarkers for motor and non-motor symptoms in Parkinson's disease

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Contact

Dr. Juliet Roudini

Research fellow – Patient & Stakeholder Engagement, Cluster of Excellence NeuroCure