Charité PSE projects
Here you will find information on current and completed projects in the area of Patient & Stakeholder Engagement at BIH and Charité. We would also be happy to present your project on these pages. If you are interested, please contact us at any time.
You can find more participatory research projects from Berlin research institutions in the Participatory Research Map.
SAPIENCE Project - Social and Psychological Long-Term Impact of Nmda Receptor Encephalitis
NMDA receptor encephalitis (NMDARE) is a rare autoimmune disease that predominantly affects young people and can lead to long-term impairments. The psychosocial consequences of the disease have so far been scarcely investigated in a systematic way. The international SAPIENCE project is the first to comprehensively examine these long-term effects using qualitative and quantitative methods in close cooperation with national and international patient organizations, with the aim of improving care and quality of life for those affected.
SAFED: Working together for safer and better research
SAFED connects a Germany-wide patient advisory board with researchers to enhance safety, quality, and transparency in stroke research. The platform bundles knowledge, promotes exchange, and supports research projects that are developed in a practice-oriented, responsible, and patient-centered manner.
Symptom recording by patients (SAMS-Pat (SAMS-Pat)
Patients with rare diseases often experience a years-long odyssey through the healthcare system before their disease is even properly diagnosed. In addition, research into rare diseases is impeded by a lack of data. SAMS-Pat, an app for the systematic recording of symptoms and diagnoses of rare diseases, aims to improve this situation. The app will be developed in a participatory process together with patients.
Further information (in German)
Patient Research Council NCT Berlin – Patient Involvement in Cancer Research
In the National Center for Tumor Diseases (NCT), patients are research partners on an equal footing. The members of the PatFoR NCT support researchers and institutions in integrating the patient perspective more strongly.
I-COUNT: Inclusion, Community Outreach and Understanding for New Therapies
The I-COUNT project aims to enhance the inclusion of marginalized groups—especially transgender and non-binary individuals—in HIV cure and treatment research by identifying barriers, co-developing assessment tools, and improving science communication to promote equity and access.
The Patient Advisory Board of the Charité Comprehensive Cancer Center – Working Together for Better Care of Cancer Patients
The CCCC Patient Advisory Board is a group of individuals who contribute their personal experiences with cancer. The goal is to improve the patient care and to do research not only for patients but with patients.
Active Patient Engagement in Palliative Research Projects at the German Heart Center of Charité
Reseachers at the German Heart Center of Charité want to improve palliative care for people with heart disease. A patient advisory board supports the team in asking the right questions and in striking the right tone.
Participatory research design in the research practice network "RESPoNsE": The Patient Advisory Board
Since the beginning of 2022, a new advisory board has been supporting to bring the perspective of lay patients into general medical research in the research practice network “RESPoNsE ” and to shape it in a participatory manner.
Charité COVID-19 project for and with homeless people
There is few information that deals with the reality of homeless people’s lives in the Corona pandemic. In this project, a participatory approach was used to develop digital health information services on COVID-19.
Burden of disease in myasthenia gravis: taking the patient’s perspective
In this study, patients were actively involved already in the planning phase to ensure that the questions asked are relevant for them.
PAFORSE: Patient-driven research for Rare Diseases
This project was funded by a QUEST Grant for Patient & Stakeholder Engagement.
"Nothing about us without us": Establishing a Patient Think Tank with #dedoc° at Charité
This project was funded by a QUEST Grant for Patient & Stakeholder Engagement.
Developing a participatory research programme for healthy ageing in the city
This project was funded by a QUEST Grant for Patient & Stakeholder Engagement.
Translational study – what impact does chronic stress have on the sexual function of women*? (FEMstress)
This project was funded by a QUEST Grant for Patient & Stakeholder Engagement.
The Autism Research Cooperation
The Autism Research Cooperation (AFK – Autismus-Forschungs-Kooperation) is an association of autistic people and autism scientists, mainly from the Humboldt University of Berlin, and exists already since 2007. The aim is to research questions jointly that are relevant for autistic people. In the long term, the research results should contribute to improving the quality of life of people on the autism spectrum.
The VR FestLab
A virtual party simulation was developed together with adolescents in a co-creation process. This should help strengthening the alcohol-related competence of adolescents.
The project "Women 5.0"
The participatory development of a model project for ensuring a low-threshold regional and equitable access to gynaecologic care for women from the age of 50 was the aim of the project "Women 5.0".
Participatory research in the neighbourhood
The significance of neighborhood characteristics for health was investigated with residents and practice partners from a district in Berlin-Kreuzberg.
The OPEN Project
In the OPEN project (Outcomes of Patients' Evidence with Novel, Do-it-Yourself Artificial Pancreas Technology), Charité has joined other academic and non-academic international partners in an interdisciplinary consortium to investigate aspects of the use of open-source artificial pancreas systems.
Planning and design of an intervention study together with stakeholders
Scientists of the research group "Complementary and Integrative Medicine" of the Institute for Social Medicine, Epidemiology and Health Economics of the Charité have investigated the effect of self-acupressure on the reduction of menstrual pain.
The Charité MS Initiative
In 2016, the Charité launched an initiative for patients with multiple sclerosis (MS). Its goal is to improve the quality of clinical MS trials and to increase patient relevance.