PSE@NCRC and cRDM@NCRC: Keeping NeuroCure at the forefront of responsible translational neuroscience
The NeuroCure Clinical Research Center (NCRC) with its embedded BrainLab module aims to translate preclinical NC research into proof-of-concept studies in humans. In cooperation with the QUEST Center of the BIH two novel complementary structural elements, patient & stakeholder engagement (PSE) and clinical research data management (cRDM) are introduced and implemented.
The cRDM part will work closely with NCRC PIs aiming to improve the management of their clinical study data often collected in REDCap, following the FAIR criteria. Transfer of data into the BIH virtual research environment (VRE) will allow researchers to make data available in a secure and searchable way within groups, with collaboration partners and ideally beyond. To this end, workflows and templates will be developed that enable secure and complete data transfer to the VRE, followed by anonymization procedures, quality checks as well as metadata enrichment. The necessary privacy regulations and data protection measures will also be considered. Dr. Christina Habermehl will be working as cRDM project staff to help turning these ambitious goals into reality.
Active involvement of patients in the research process has the potential to 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 will serve as a matchmaking structure to bring together researchers and patients. Methods and materials to actively engaging specific patient groups will be developed and shared with the NC and NCRC research community. In addition, they offered a PSE funding (application deadline was until the end of august) to NeuroCure and NCRC researchers who wish to implement PSE measures into their studies. The PSE officer, Dr. Juliet Roudini, will help implementing PSE structures at NeuroCure.
- Prof. Dr. Matthias Endres & Dr. med. Alexander Heinrich Nave, Clinic for 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, Clinic for 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 the multicentric interventional study
Prof. Dr. med. Dr. phil. Andreas Heinz, Department of Psychiatry and Psychotherapy Campus Charité Mitte and NeuroCure Clinical Research Center NCRC, Project: Development of a PROMIS Item Bank to Design Targeted Interventions in Psychosis: A Participatory Research
Dr. Feldmann, Lucia K. / Dr. Habets, Jeroen, Department of Neurology with Experimental Neurology, Project: Long-term monitoring of biomarkers for motor and non-motor symptoms in Parkinson's disease
Dr. Juliet Roudini
Research Associate - Management Patient & Stakeholder Engagement (Cluster of Excellence NeuroCure)
Dr. Christina Habermehl
Research Associate – Clinical Research Data Management (Cluster of Excellence NeuroCure)