{"id":174,"date":"2023-10-30T11:40:30","date_gmt":"2023-10-30T10:40:30","guid":{"rendered":"https:\/\/www-wp.iisys.de\/en\/?post_type=forschungsgruppe&p=174"},"modified":"2023-11-28T09:17:17","modified_gmt":"2023-11-28T08:17:17","slug":"analytical-information-systems-2","status":"publish","type":"forschungsgruppe","link":"https:\/\/www-wp.iisys.de\/en\/research\/research-groups\/analytical-information-systems\/analytical-information-systems-2\/","title":{"rendered":"Projects"},"content":{"rendered":"\n
Project period: 01.04.2021 – 31.03.2024<\/p>\n\n\n\n
SelEe is a joint project with Medical Informatics Group of the University Hospital Frankfurt (MIG<\/a>). For more information, please visit: <\/a>https:\/\/www.bmbf.de\/de\/buergerforschung-225.html<\/a> and <\/a>http:\/\/www.buergerschaffenwissen.de\/<\/a><\/p>\n\n\n\n In Europe, a disease is considered rare if it affects no more than 5 in 10,000 people. On the way to diagnosis, affected people often experience a doctor’s “odyssey”, since specialists and specialized facilities for these diseases are also rare. With about 8000 different rare diseases and about 4 million affected people in Germany, the findings of science are more difficult to access. Affected people organize themselves in self-help groups and often become experts for their respective diseases.<\/p>\n\n\n\n SelEe therefore wants to gain new knowledge in the field of rare diseases together with citizens. To this end, citizens contribute their knowledge, experience and ideas directly to the project, develop new approaches and improve the cooperation between all stakeholders, thereby contributing to the improvement of the care and treatment situation of people with rare diseases.<\/p>\n\n\n\n Throughout the research process, citizens are involved and supported by scientists. Already in the first steps of the research process, citizens can participate and actively shape the research goals in workshops, which can contribute to the expansion of knowledge in the field of rare diseases. There will be several (online) workshops, but the exchange will mainly take place via a virtual platform during the course of the project.<\/p>\n\n\n\n Participation is open to all citizens who suffer from rare diseases themselves, who suspect it, who care for affected persons or who are interested in advancing research in the field of rare diseases.<\/p>\n\n\n\n The data obtained will be evaluated jointly by the citizens and researchers. The data is collected in the project via the online-based SelEe platform and made available there anonymously for joint work. Citizens can contact the researchers directly, e.g. by e-mail or via regular online video conferences.<\/p>\n\n\n\n In addition, citizens are regularly informed about news, current statistics are published and current research findings obtained through SelEe are made available for discussion.<\/p>\n\n\n\n In SelEe, citizens help to answer questions in the field of rare diseases and citizen research themselves. First of all, SelEe makes it possible to collect knowledge and experiences of people affected by different rare diseases, to identify commonalities and to research and develop new approaches, e.g. with regard to communication, treatment, diagnosis and documentation.<\/p>\n\n\n\n This in turn helps researchers, caregivers and experts to address the needs of individual rare diseases in a more individualized and specialized manner and thus improve the overall quality of care in the field of rare diseases.<\/p>\n\n\n\n The knowledge gained can directly inform treatment and the future design of research. Finally, SelEe shows that citizen science can also provide valuable insights in the medical field.<\/p>\n\n\n\n <\/p>\n\n\n\n <\/p>\n\n\n\n A concept is currently being developed to recruit interested citizens for the selection of diseases to be studied and the development of research questions. In the context of the Forum Citizen Science 2021, a networking of participants in the field of citizen science projects with health and medical relevance is taking place in the working group Citizen Science in Medicine and Health Research.<\/p>\n\n\n\n
The project is funded by the Federal Ministry of Education and Research as part of the Citizen Research funding area. It is one of 15 projects that will advance the collaboration of citizens and scientists in terms of content and methodology and provide answers to societal challenges until the end of 2024.<\/p>\n\n\n\n