scholarly journals Development of Registry Data to Create Interactive Doctor-Patient Platforms for Personalized Patient Care, Taking the Example of the DESTINY System

2021 ◽  
Vol 3 ◽  
Author(s):  
Arnfin Bergmann ◽  
Martin Stangel ◽  
Markus Weih ◽  
Philip van Hövell ◽  
Stefan Braune ◽  
...  

“Real-world evidence (RWE)” is becoming increasingly important in order to integrate the results of randomized studies into everyday clinical practice. The data collection of RWE is usually derived from large-scale national and international registries, often driven by academic centers. We have developed a digitalized doctor–patient platform called DESTINY (DatabasE-assiSted Therapy decIsioN support sYstem) that is utilized by NeuroTransData (NTD), a network of neurologists and psychiatrists throughout Germany. This platform can be integrated into everyday practice and, as well as being used for scientific evaluations in healthcare research, can also serve as an individual, personalized treatment application. Its various modules allow for a timely identification of side-effects or interactions of treatments, can involve patients via the “My NTC Health Guide” portal, and can collect data of individual disease histories that are integrated into innovative algorithms, e.g., for the prediction of treatment response [currently available for multiple sclerosis (MS), with other indications in the pipeline]. Here, we describe the doctor–patient platform DESTINY for outpatient neurological practices and its contribution to improved treatment success as well as reduction of healthcare costs. Platforms like DESTINY may facilitate the goal of personalized healthcare.

2015 ◽  
Vol 9 (2) ◽  
pp. 136 ◽  
Author(s):  
Mefkure Eraksoy ◽  
Helmut Butzkueven ◽  
Tjalf Ziemssen ◽  
Robert Zivadinov ◽  
◽  
...  

Real-world evidence provides important information concerning the long-term effectiveness and safety of disease-modifying treatments (DMTs) for multiple sclerosis (MS) in clinical practice in a large number of patients. These data enhance and extend the results from randomised clinical trials and include information that cannot easily be obtained in trials such as treatment efficacy in non-trial populations (e.g. those with co-morbidities, older patients and children) and long-term safety analyses. Such data are compatible with specialist clinical practice and, when accumulated in multicentre databases using an agreed minimum dataset, these data can provide invaluable information on long-term disease progression and treatment. Real-world evidence in terms of fingolimod is reviewed and clearly demonstrates its long-term effectiveness and safety. Currently, imaging data are not systematically collected but the development of improved standard magnetic resonance imaging (MRI) protocols and automated procedures now makes this a realistic option in the near future. Automated (or largely automated) MRI analytics are likely to greatly enhance and further strengthen real-world evidence for outcomes of different treatment algorithms incorporating more sophisticated MRI measures.


2020 ◽  
Vol 12 (1S) ◽  
pp. 25-28
Author(s):  
S. V. Petrov ◽  
O. V. Boyko ◽  
A. N. Boyko

Cladribine tablets are a new drug for the immune reconstitution therapy of highly active multiple sclerosis (HAMS). After discussing the characteristics of action of the drug in clinical trials, the authors give their own experience of its use in the Moscow Multiple Sclerosis Center.Objective: to assess their own experience with cladribine tablets in the treatment of HAMS patients in everyday clinical practice.Patients and methods: In 2018–2020, a total of 14 patients with HAMS and an average exacerbation frequency of 2.42 per year (34 exacerbations) received a full cycle of cladribine therapy. The patients independently purchased the drug for individual indications. Prior to starting therapy and every subsequent 6 months, all the patients underwent contrast-enhanced magnetic resonance imaging (MRI) of the brain, cervical and thoracic spine, and chest X-ray, Expanded Disability Status Scale (EDSS) scoring, clinical blood analysis, lymphocyte subpopulation estimation, biochemical blood analysis. The levels of leukocytes, lymphocytes, and lymphocyte subpopulations were estimated after one- and two-year cladribine tablet therapy cycles.Results and discussion. During a two-year cladribine tablet therapy cycle, there were only 2 exacerbations (0.1 per year); the EDSS values stabilized, while they slightly decreased; according to MRI, the number of foci declined substantially from 78 (an average of 3.12 per image) before treatment to 6 (an average of 0.2 per image) after 2 years of treatment. No serious adverse events were recorded in patients taking cladribine tablets. By the end of the first year of treatment, the level of lymphocytes returned to normal in all the patients. The similar picture was noted after the second cycle of therapy. More than two-thirds of patients showed a decline in CD19+ B lymphocytes. An anti-B-cell effect was recorded even in patients who had normal absolute lymphocyte counts, as shown by clinical blood analysis. The findings demonstrated the efficacy and safety of cladribine tablets in patients with HAMS.Conclusion. Cladribine tablets are a highly effective treatment for HAMS.


2016 ◽  
Vol 13 (03) ◽  
pp. 118-120
Author(s):  
W. Wölwer ◽  
W. Gaebel ◽  
V. Toeller

Summary Background: The provision of mental healthcare for patients with schizophrenia is still characterized both by knowledge gaps and by treatment gaps in everyday clinical practice. Aim: This article discusses the different types of treatment gaps in schizophrenia and describes actions taken to overcome these gaps especially in Europe.


2015 ◽  
Vol 156 (15) ◽  
pp. 609-613
Author(s):  
Miklós Somlói ◽  
Emil Toldy-Schedel ◽  
Zoltán Nényei ◽  
Róbert Böszörményi ◽  
János Tomcsányi

Introduction: Extension of electrocardiographic monitoring via loop recorder implantation may increase the diagnostic yield of syncope work-up. Aim: In this retrospective observational study, the authors wanted to evaluate the diagnostic performance of implantable loop recorder in the everyday clinical practice. Method: The authors analyzed the electronically stored data of all patients who underwent loop recorder implantation between 2005 and 2014 in their cardiology department because of recurrent syncope of undetermined origin. Results: There were 52 loop recorder implantations within the study period. During the 167 (±136) days of monitoring, 36 (69.2%) diagnostic events occurred. In two-thirds of events, (46.2% of all monitored patients) a specific arrhythmia diagnosis was reached, allowing definitive treatment in these cases. In this selected population, there was no correlation between age, presence of known high-risk predictors, or accompanying trauma, and the mechanism of syncope. Conclusions: The high diagnostic rate of implantable loop recorder in the everyday clinical practice is in accordance with the findings in prospective clinical studies. This observation supports the early application of loop recorder in the diagnostic algorithm of syncope. Orv. Hetil., 2015, 156(15), 609–613.


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