What Are Patient Registries and Why Are They Needed (Through a Number of Examples of Psoriasis Registries)

2021 ◽  
Vol 76 (2) ◽  
pp. 177-186
Author(s):  
Alexey A. Kubanov ◽  
Elena V. Bogdanova

The article substantiates the relevance of registries of patients as illustrated by registries of patients with psoriasis, gives a comparative characteristic and description of the advantages and disadvantages of randomized controlled and observational registry studies, considers the main goals of patient registers. The importance of patient registers as sources of additional knowledge about diseases is described. Review of the existing dermatological patient registers is given. The paper provides the detailed description of the most significant registries of patients with psoriasis: PSOLAR, Badbir, Corrona, BIOBADADERM and others. An overview of publications and main results of the research based on registries of psoriasis patients is presented. A description of the register of patients with psoriasis as part of the Database of patients with chronic diseases of the skin and subcutaneous tissue, maintained by the Russian Society of Dermatovenereologists and Cosmetologists since 2018 is given. The article substantiates the relevance of patient registries as illustrated by registries of patients with psoriasis, gives a comparative characteristic and description of the advantages and disadvantages of randomized controlled studies and observational registry studies, argues in favor of complementarity of data from randomized controlled trials and registry-based studies. Consideration of the main goals of patient registers is given. The importance of patient registers as sources of additional knowledge about diseases and quality of medical care is described. Review of the existing dermatological patient registers is given. The paper provides the detailed description of the most significant registries of patients with psoriasis: PSOLAR, Badbir, Corrona, BIOBADADERM and others. An overview of publications and main results of the research based on registries of patients with psoriasis is presented. A description of the register of patients with psoriasis as part of the Database of patients with chronic diseases of the skin and subcutaneous tissue, maintained by the Russian Society of Dermatovenereologists and Cosmetologists since 2018 is given, as are inclusion criteria. In addition, the main federal registries of patients that are maintained in the Russian Federation are listed, the goals of their maintenance are indicated.

Pain medicine ◽  
2019 ◽  
Vol 4 (3) ◽  
pp. 67-70
Author(s):  
Yevhenii Grizhimalsky ◽  
Andrii Harha

Labour pain is recognized by some women as the most severe pain that they have ever felt in their life. Epidural analgesia is an effective method of pain relief in labour and is considered as the gold standard of analgesia for delivery. Traditionally, epidural analgesia in Ukraine is performed without the ability for the patient to control the process of anesthesia. The authors became interested in the delivery of local anesthetics by patient­controlled epidural analgesia instead of the traditional physician methods. In randomized controlled studies there is an evidence that the PCEA method tends to improve the quality of pain relief and increase the patient satisfaction.


2014 ◽  
Vol 8 (1) ◽  
pp. 77-81 ◽  
Author(s):  
Thierry Appelboom ◽  
Nathalie Maes ◽  
Adelin Albert

This retrospective observational study summarizes the experiences of 820 patients treated with a new Curcuma extract (Flexofytol®, 4-6 capsules per day), for more than 6 months for various forms of painful osteoarthritis. These experiences were reported by 110 Belgian general practitioners via a questionnaire that included quality-of-life parameters for assessing patient experience. Data were submitted to an independent statistician for analysis. Within the first 6 weeks, Flexofytol® improved patient pain, articular mobility, and quality of life. Excellent tolerance was reported, and more than half of these patients were able to discontinue analgaesic and anti-inflammatory drugs. Patient satisfaction was confirmed by their decision to maintain Flexofytol® therapy for more than 6 months. These data must be confirmed with randomized controlled studies. We currently conclude that Flexofytol® which is based on a new preparation of curcumin, is as a potential neutraceutical for the care of patients complaining of joint problems, with excellent tolerance and rapid benefits for articular mobility, pain, and quality of life.


Angiology ◽  
2005 ◽  
Vol 56 (6_suppl) ◽  
pp. S25-S32 ◽  
Author(s):  
Albert-Adrien Ramelet

Patients suffering from any class of the Clinical, Etiological, Anatomical, Pathophysiological (CEAP) classification of chronic venous disease (CVD) may be symptomatic (C0s-C6s). Leg heaviness, discomfort, itching, cramps, pain, paresthesia, and edema (C3) are the most frequent manifestations of CVD and a major reason for medical consultation. Daflon 500 mg (micronized purified flavonoid fraction [MPFF]) is an effective treatment for symptoms and edema in CVD as demonstrated in several randomized controlled studies. A 2-month, double-blind study in 40 patients established the superiority of Daflon 500 mg over placebo with regard to symptoms and objective signs. This was confirmed in another double-blind, placebo-controlled trial (2 months’ treatment, 160 patients), and in the Reflux assEssment and quaLity of lIfe improvEment with micronized Flavonoids (RELIEF) study. The latter included 5,052 patients in 23 countries, using a visual analog scale for evaluating pain, leg heaviness, cramps, and a sensation of swelling. All symptoms showed significant and progressive improvement. The quality-of-life results (scores on the ChronIc Venous Insufficiency quality of life Questionnaire [CIVIQ]) paralleled those of symptoms. The decrease in the ankle and calf circumferences was significantly greater (p<0.001) in the group of patients treated with Daflon 500 mg in two studies, and correlated well with the improvement in the sensation of swelling (p<0.001). This was confirmed with more sophisticated measurement techniques as in the RELIEF study or in a trial assessing edema with an optoelectronic volumeter in 20 patients. A further double-blind, randomized, controlled study established a statistically significant difference in favor of Daflon 500 mg in comparison with diosmin, both on symptoms and edema. The therapeutic efficacy of Daflon 500 mg on CVD symptoms and edema has been demonstrated in double-blind, randomized, controlled studies. Further studies using a new approach may define the most precise and validated methodology for application in future research in phlebology.


2019 ◽  
Vol 14 (1) ◽  
pp. 174-179 ◽  
Author(s):  
David C. Klonoff

Real-world evidence (RWE) is the clinical evidence about benefits or risks of medical products derived from analyzing real world data (RWD), which are data collected through routine clinical practice. This article discusses the advantages and disadvantages of RWE studies, how these studies differ from randomized controlled trials (RCTs), how to overcome barriers to current skepticism about RWE, how FDA is using RWE, how to improve the quality of RWE, and finally the future of RWE trials.


2013 ◽  
Vol 35 (1) ◽  
pp. E5 ◽  
Author(s):  
Matthew D. Alvin ◽  
Daniel Lubelski ◽  
Edward C. Benzel ◽  
Thomas E. Mroz

Cervical spondylotic myelopathy (CSM) often can be surgically treated by either ventral or dorsal decompression and fusion. However, there is a lack of high-level evidence on the relative advantages and disadvantages for these treatments of CSM. The authors' goal was to provide a comprehensive review of the relative benefits of ventral versus dorsal fusion in terms of quality of life (QOL) outcomes, complications, and costs. They reviewed 7 studies on CSM published between 2003 and 2013 and summarized the findings for each category. Both procedures have been shown to lead to statistically significant improvement in clinical outcomes for patients. Ventral fusion surgery has been shown to yield better QOL outcomes than dorsal fusion surgery. Complication rates for ventral fusion surgery range from 11% to 13.6%, whereas those for dorsal fusion surgery range from 16.4% to 19%. Larger randomized controlled trials are needed, with particular emphasis on QOL and minimum clinically important differences.


2016 ◽  
Vol 65 (6) ◽  
pp. 109-115
Author(s):  
Konstantin V Yaroslavsky ◽  
Vladimir O Atlasov ◽  
Vyacheslav M Bolotskykh

The article considers the issues of managing quality of medical care in obstetrics, the aim of which is to consider different management models, their advantages and disadvantages. Described the system of total quality management based on the needs of the patient. The presented method models outputs and its use in obstetric institution for integrated assessment activities and ensure continuous improvement and improve the quality of care. The calculation of the performance of the obstetric hospital and dynamic analysis of their effectiveness.


Author(s):  
Liudmyla Dushyk ◽  
Valentina Mykhaylychenko ◽  
Olexii Tsivenko

It is shown that the use of simulation technologies in the learning process allows medical students to gain practical experience and qualitatively increase the level of their professionalism against the background of the appropriate level of theoretical knowledge. The content of simulation training as an art to imitate reality, the sequence of events and actions or the mental process of training in the quality of medical care to patients is considered. Its advantages and disadvantages are revealed. An analysis of the effectiveness of simulation training with the involvement of a standardized “patient” during the internship by students of the Department of Surgical Diseases. The role of teachers of the department is shown, who observed the behavior of the “standardized patient” and evaluated the results of students’ work according to the scoring system, according to the criteria. A detailed analysis of the training results, a joint discussion of measures aimed at improving treatment and diagnostic tactics and errors were conducted. Methodical recommendations for training have been developed. It is concluded that the method of “standardized patients” is an effective way to gain practical experience of clinical competence and its evaluation. The worldwide spread of this method indicates the need for its intensive implementation in Ukraine.


2022 ◽  
Vol 8 (1) ◽  
pp. 114-121
Author(s):  
B. Niyazov ◽  
S. Niyazovа

Insufficient availability of emergency medical services to the rural population is noted. The dynamics of the growth of calls to emergency medical services testifies to the fact that emergency medical institutions have taken over part of inpatient services for the provision of emergency care to patients with chronic diseases and acute colds.


Stroke ◽  
2020 ◽  
Vol 51 (9) ◽  
pp. 2863-2871
Author(s):  
Andreia Coelho ◽  
Tossapol Prassaparo ◽  
Armando Mansilha ◽  
Jaap Kappelle ◽  
Ross Naylor ◽  
...  

Transcarotid revascularization is an alternative to transfemoral carotid artery stenting, designed to avoid aortic arch manipulation and concomitant periprocedural stroke. This article aims to perform a detailed analysis on the quality of the currently available evidence on safety and efficacy of transcarotid artery revascularization. Although current evidence is promising, independent randomized controlled studies comparing transcarotid artery revascularization with carotid endarterectomy in recently symptomatic patients are lacking and will be necessary to establish the true value of transcarotid artery revascularization in carotid artery revascularization.


2021 ◽  
Vol 12 ◽  
Author(s):  
Martin Kerwer ◽  
Marlene Stoll ◽  
Mark Jonas ◽  
Gesa Benz ◽  
Anita Chasiotis

Plain language summaries (PLS) aim to communicate research findings to laypersons in an easily understandable manner. Despite the societal relevance of making psychological research findings available to the public, our empirical knowledge on how to write PLS of psychology studies is still scarce. In this article, we present two experimental studies investigating six characteristics of PLS for psychological meta-analyses. We specifically focused on approaches for (1) handling technical terms, (2) communicating the quality of evidence by explaining the methodological approach of meta-analyses, (3) explaining how synthesized studies operationalized their research questions, (4) handling statistical terms, (5) structuring PLS, and (6) explaining complex meta-analytic designs. To develop empirically validated guidelines on writing PLS, two randomized controlled studies including large samples stratified for education status, age, and gender (NStudy1=2,288 and NStudy2=2,211) were conducted. Eight PLS of meta-analyses from different areas of psychology were investigated as study materials. Main outcome variables were user experience (i.e., perceived accessibility, perceived understanding, and perceived empowerment) and knowledge acquisition, as well as understanding and knowledge of the quality of evidence. Overall, our hypotheses were partially confirmed, with our results underlining, among other things, the importance of explaining or replacing content-related technical terms (i.e., theoretical concepts) and indicating the detrimental effects of providing too many details on statistical concepts on user experience. Drawing on these and further findings, we derive five empirically well-founded rules on the lay-friendly communication of meta-analytic research findings in psychology. Implications for PLS authors and future research on PLS are discussed.


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