Stakeholder EngagementClosed
NeuroCure Clinical Research Center – BrainLab Project PSE
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 the 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". The 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 the chances of translational success. Co-developing research protocols with patients can also increase recruitment into clinical trials. PSE@NCRC serves as a matchmaking structure to bring researchers and patients together. We develop methods and materials to actively engage specific patient groups and share these with the NC and NCRC research community. In addition, we provide 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 provide the opportunity for researchers and patients/patient organizations to communicate with each other. The results of co-created projects will be published – in addition to scientific publications – on channels preferred by patient organizations such as flyers, podcasts, and websites.
Funding announcement
NeuroCure Patient & Stakeholder Engagement Fund 2023 – Call
NeuroCure Patient & Stakeholder Engagement Fund 2023 – Application Form
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 Berlin, Project: 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