Johanna Schaefer's research while affiliated with Goethe-Universität Frankfurt am Main and other places
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Publications (14)
Zusammenfassung
Eine Erkrankung zählt in der Europäischen Union zu den Seltenen Erkrankungen (SE), wenn diese nicht mehr als 5 von 10.000 Menschen betrifft. Derzeit existiert mit mehr als 6000 SE eine sowohl große als auch heterogene Menge an unterschiedlichen Krankheitsbilder, die in ihrer Symptomatik komplex, vielschichtig und damit im medizinisc...
The diagnosis of patients with rare diseases is often delayed. A Clinical Decision Support System using similarity analysis of patient-based data may have the potential to support the diagnosis of patients with rare diseases. This qualitative study has the objective to investigate how the result of a patient similarity analysis should be presented...
The diagnosis of patients with rare diseases is often delayed. A Clinical Decision Support System using similarity analysis of patient-based data may have the potential to support the diagnosis of patients with rare diseases. This qualitative study has the objective to investigate how the result of a patient similarity analysis should be presented...
Background:
Rare Diseases (RDs), which are defined as diseases affecting no more than 5 out of 10,000 people, are often severe, chronic and life-threatening. A main problem is the delay in diagnosing RDs. Clinical decision support systems (CDSSs) for RDs are software systems to support clinicians in the diagnosis of patients with RDs. Due to their...
![Fig. 1 From research questions to analysis according to Mayring [32]](profile/Jannik-Schaaf/publication/344303218/figure/fig1/AS:937397407739905@1600504366405/From-research-questions-to-analysis-according-to-Mayring-32_Q320.jpg)
Background:
Patients with rare diseases (RDs) are often diagnosed too late or not at all. Clinical decision support systems (CDSSs) could support the diagnosis in RDs. The MIRACUM (Medical Informatics in Research and Medicine) consortium, which is one of four funded consortia in the German Medical Informatics Initiative, will develop a CDSS for RD...
Background Patients with a rare disease (RD) are often diagnosed too late or not at all. Clinical decision support systems (CDSSs) could support the diagnostic process in rare diseases (RDs). The MIRACUM (Medical Informatics in Research and Medicine) consortium, which is one of four funded consortia in the German Medical Informatics Initiative, wil...
Background Patients with rare diseases (RDs) are often diagnosed too late or not at all. Clinical decision support systems (CDSSs) could support the diagnosis in RDs. The MIRACUM (Medical Informatics in Research and Medicine) consortium, which is one of four funded consortia in the German Medical Informatics Initiative, will develop a CDSS for RDs...
Background
Patients with rare diseases (RDs) are often diagnosed too late or not at all. Clinical decision support systems (CDSSs) could support the diagnosis in RDs. The MIRACUM (Medical Informatics in Research and Medicine) consortium, which is one of four funded consortia in the German Medical Informatics Initiative, will develop a CDSS for RDs...
Background Rare Diseases (RD), which are defined as diseases affecting not more than 5 out of 10,000 people, are often severe, chronic, degenerative and life-threating. A main problem is the delay in diagnosis of RD. Clinical Decision Support Systems (CDSS) for RD are software-systems to support physicians in the diagnosis of patients with RD. It w...
64. Jahrestagung der Deutschen Gesellschaft für Medizinische Informatik, Biometrie und Epidemiologie e. V. (GMDS)
Clinical Decision Support Systems (CDSS) are promising to support physicians in finding the right diagnosis of patients with rare diseases (RD). The MIRACUM consortium, which includes ten university hospitals in Germany, will establish a diagnosis support system for RD. This system conducts a similarity analysis on distributed clinical data with th...
Due to low prevalence of rare diseases and lack of expertise, patients suffering rare diseases are challenged with finding experts that are specialized and experienced in treating their conditions and get qualified answers. To address this issue, the approach of an interactive platform was made, which should allow affected patients or physicians th...
se-atlas - the health service information platform for rare diseases - is part of the German National Action Plan for People with Rare Diseases. The website www.se-atlas.de provides an overview of health care providers and support groups focusing on rare diseases in Germany. Since the start of se-atlas in 2013, several strategies are being develope...
Citations
... Currently existing CS systems are placed in other fields of human medicine [10]. Regardless of the CS character, disease-specific apps can be found [35][36][37][38][39][40][41], apps and websites that refer people to health care providers [42,43], apps for sharing experiences and networking [44,45], a symptom checker [46], information and support apps for RD-affected persons [47,48]. Some of these apps are available in English only. ...
![[object Object]](https://i1.rgstatic.net/ii/profile.image/11431281089419391-1665565329936_Q64/Michaela-Neff.jpg)
![[object Object]](https://i1.rgstatic.net/ii/profile.image/486671834718208-1493043015103_Q64/Holger-Storf.jpg)
... In the past, we have conducted several studies on the requirements elicitation of DISERDIS [6,[10][11][12]. In this paper, we summarize the results of these studies and derive concrete requirements on this basis. ...
![[object Object]](https://i1.rgstatic.net/ii/profile.image/621381737803802-1525160359911_Q64/Martin-Sedlmayr.jpg)
![[object Object]](https://i1.rgstatic.net/ii/profile.image/272487283949596-1441977439418_Q64/Hans-Ulrich-Prokosch.jpg)
... With the advancement in health information technology and digital transformation of medicine, the development of computerised CDS, software designed as an active knowledge system using two or more items of patient data to generate case-specific advice to assist clinicians and patients in clinical decisionmaking, is increasingly common. 17 CDS systems have been used to support clinical decision-making for rare diseases, 18 in oncology 19 (specifically breast cancer), 20 heart disease, 21 diabetes, 22 Alzheimer's disease, 23 chronic kidney disease 24 and chronic obstructive pulmonary disease. 25 Evidence from these applications suggests CDS can improve patient care. ...
... In the past, we have conducted several studies on the requirements elicitation of DISERDIS [6,[10][11][12]. In this paper, we summarize the results of these studies and derive concrete requirements on this basis. ...
![[object Object]](https://i1.rgstatic.net/ii/profile.image/272744172486671-1442038686850_Q64/Martin-Boeker.jpg)
... Currently, various agent-based software solutions have been published with the aim of improving patient care. For example, see the work by Schaaf and colleagues [29] with a system for diagnostic support in patients with rare diseases or Nguyen and colleagues [30] with a system that supports optimal antibiotic therapy. ...
... For instance, a person affected by a RD can enter the name of the disease in a exible search and subsequently receive all results on existing HCPs, including specialized rare diseases centres (RDCs) and patient organisations in Germany. Furthermore, se-atlas displays information on research networks such as the European Reference Networks (ERNs) and medical societies [8,11]. The search for HCPs and patient organisations is the central function of se-atlas. ...
