Australia ; Humans ; Registries ; Twins

Background: The Psoriasis Registry (PsorReg) was created by the Psoriasis Foundation of the Philippines with the goal of assessing the true magnitude of psoriasis in Davao City. Objectives: To determine the demographic and clinical profiles of Filipino patients enrolled in PsorReg. Methods: Cross-sectional study among adult patients enrolled in PsorReg. Results: A total of 131 patients were included in the study. Mean age was 43.89 ± 15.8 years old. Chronic plaque psoriasis (96.2%) was the most common clinical pattern. 63.4% had nail involvement, while 35.1% had psoriatic arthritis. BMI was normal in 51.1% of patients. Common co-morbidities were hypertension (19.1%), diabetes (10.7%), and dyslipidemia (9.2%). Most common treatment were topical medications, while biologics were the least common. 42.7%, 49.6% and 37.4% had moderate psoriasis using BSA, PASI, and PGA, respectively. Majority (47.3%) reported a large effect of psoriasis on their quality of life. Conclusion This study determined the demographic and clinical profiles of adult Filipino patients registered in PsorReg in Davao City.
Psoriasis ; Registries ; Philippines ;

Background: Gout is one of the most common arthritides affecting Filipinos; yet, there is a lack of updated local data and Clinical Practice Guidelines. Objective: To describe Clinical Case Scenario (CCS) of Filipino patients with gout in a tertiary referral hospital seen over a year. Design: Cross-sectional study. Methods: Patients’ characteristics, risk factors, disease course, management, and CCS were obtained by a rheumatologist using a questionnaire. Descriptive statistics were used. Results: One hundred eight patients were included with a median age of 58 (range 26–80) years. 106 were male (98%); and, 2 were female (2%) who were menopause and had chronic kidney disease (CKD). Most prevalent CCS were stages 9 (29%), 1 (16%), and 2 (15%). The majority of cases had tophi and belonged to CCS 4-9 (62%). This signifies that most patients had advanced gout. Consistent with international and local data: almost half had hypertension (46%), a third had CKD (36%). Most were ethanol drinkers (65%) and smokers (57%). Unexpectedly, not many were obese (10%) or had metabolic syndrome (2%). The initial joint involved was the ankle (52%) rather than the first metatarsophalangeal joint (40%). Almost half of the patients presented with two or more joint involvement (46%) than monoarthritis (54%). Patients with acute flare were most commonly prescribed NSAIDs (77%), followed by colchicine (62%). Most were prescribed allopurinol (44%) compared with febuxostat (37%) for urate-lowering therapy. Only 16% received patient education. Medication compliance was 65%, but follow-up compliance was less than 18%. Comparing the Filipino clinical profile to historical data suggests an increased incidence of gout in the young and an increase in comorbidity prevalence. Conclusion: This study reports a cohort of Filipino gout patients. Comorbidities are similar to world figures but differ in the low incidence of obesity and metabolic syndrome. It also differs from literature in having the ankle as the most common initial joint presentation. Management and compliance were also described. As a pilot study for a registry, this study can be implemented at different institutions to broaden and monitor the ever-changing Filipino gout profile. Recommendation A larger sample size and a more extended observation period are recommended to estimate gout CCS prevalence, flare risk factors, and treatment response more accurately. Other outcomes that can be measured are mortality rates and etiologies for each CCS.
Gout ; Classification ; Comorbidity ; Registries

Objective: To investigate the project characteristics of oral clinical trials registered in Chinese Clinical Trial Registry (ChiCTR), and to provide reference for medical institutions to improve the quality of oral clinical trials and formulate management systems. Methods: The ChiCTR database was retrieved to collect all the oral-related clinical trials from the time of database establishment to July 25, 2021. Those clinical trials were analyzed statistically in respect of name of registered project, registration time, registration status, regional distribution of research institutions, approval status by ethics committee, sample size, source of funds, involved disease, research type and design, randomization method, and whether blind method was adopted. Results: A total of 778 oral clinical trials, which studied mainly in the oral and maxillofacial diseases, periodontal tissue diseases, oral implant diseases, oral mucosal diseases, and oral prosthetic diseases, were retrieved in the database. Beijing, Sichuan, Shanghai, Guangdong and Hubei were major regions where oral clinical trials were carried out, accounting for 69.68% (772/1 108) of the total. The top four funding sources were hospital finance [24.93% (186/746)], local government finance [22.39% (167/746)], self-financing [17.69% (132/746)], and national finance [12.47% (93/746)]. For the types of researches, 520 interventional studies and 244 observational studies were identified (accounting for 66.84% and 31.36%, respectively). The research designs were dominated by ways of randomized control (381, 48.97%), of which 240 (62.99%) trials were with missing or unspecified blinding methods. Conclusions: Oral clinical trials are increasing year by year, but they are regionally imbalanced, and still need to be further improved in registration information and research design. Administrative departments should pay more attention to strengthen the publicity and education on the registration and publication mechanism of clinical trials, and enhance researchers' cognitions in clinical trials registration and clinical trials design.
Beijing ; China ; Databases, Factual ; Registries

In order to strengthen the integration of reform system and build a comprehensive integration of openness and innovation, the medical device registrar system has become the institutional choice to promote the reform of the medical approval system and the innovation and development of the industry. The system allows scientific researchers, R&D institutions and enterprises to become applicants for medical device registration and to consign the production of samples and products, thus realizing the separation of market license and production license, and breaking the binding relationship between registration and production in current regulations. The medical device registrar system has laid a theoretical foundation for remolding the management system of medical devices, and has also made practical exploration for improving the reform of the medical devices supervision system, so it has important theoretical and practical significance.
Device Approval ; Industry ; Licensure ; Registries

Background: Scabies is the second most common cause of disability among skin diseases in the Philippines as of 2019. There is no large nationwide study describing the epidemiologic profile of scabies in the country. Objective. This study aimed to describe the demographic, seasonal, and geographic profile of scabies in the Philippines. Methods: We compared secondary data of two local patient registries (Philippine Dermatological Society, PDS, 2010 to 2021; and Philippine Pediatric Society, PPS, 2009 to 2021) for reported cases of scabies in the Philippines. We reported the frequency and percentage distribution according to age, sex, month, year, and type of diagnosis, and region. Results: The median annual frequency of scabies cases (mostly outpatient) for PDS (from year 2010) was 4087 (range ([QR], 342-6422 [3271.5]), while it was 183 (range [IQR], 64-234 [96.5]) (all inpatient) for PPS (from year 2009). There was a reduction to one-third (PDS) and one-fourth (PPS) of pre-pandemic numbers during the pandemic years (2020- 2021). The peak months for scabies cases were the cooler months: January (median, 12.1% of annual cases; range [IQR], 2.6%-31.4% [3.6%]) to February (median, 10.0% of annual cases; range [IQR], 1.5%-27.8% [2.5%]) based on PDS data, and November (median, 10.0% of annual cases; range [IQR], 0.0%-24.3% [7.0%]) to January (median, 9.0% of annual cases; range [IQR], 0.0%-24.3% [6.6%]) for PPS data. Overall, for PDS, age 1-4 years is the most affected age group (median, PDS, 17.5% of annual cases; range [IQR], 11.9%-25.4% [8.1%]), while it was the less than 1-yearolds (median annual cases, 48.9%; range [IQR], 29.1%-67.3% [13.20%]) among PPS pediatric population aged 0 to 18 years. Males (median, 53.9% of annual cases; range [IQR], 45.0%-67.2% [8.8%]) were more affected than females in PPS. While for PDS during earlier years (prior to 2015), males (median, 51.6% of annual cases from 2010 to 2014; range [IQR], 47.4%-52.9% [0.2%]) were more affected than females. However, males became less affected than females with median, 44.7% of annual cases from 2015 onwards (range [IQR], 43.4%-46.5% [1.2%]). NCR was the region with the highest frequency of cases in PPS (median, 52.6% of annual cases; range [IQR], 22.7%-75.0% [20.4%]). The 2nd most affected regions were Central/Eastern Visayas (34.2%, 2009-2013; range [IQR], 17.9%-54.1% [5.3%]), Bicol region (12%; 2014 to 2018; range [IQR], 17.9%-54.1% [7.4%]), Central Luzon (18%; 2019), Central/Eastern Visayas (29%, 2020), and Northern/Central Mindanao (17%, 2021). Conclusion Scabies was commonly seen in the younger age group, slightly more in females in the PDS, while slightly more among males in the PPS, in the cooler months of the year, and in the urbanized NCR.
Scabies ; Philippines ; Epidemiology ; Database ; Registries

Understanding the components of a Trauma Data Bank System (TDBS) is important, whether one is to use registry data for research or administrative purposes by an institution or a nation. TDBS has been designed to serve a number of purposes, including quality of life improvement, injury prevention, clinical research, and policy development. This review describes the history of trauma registry in the world and key components of TDBS. A detailed review of english-language articles on trauma registry was performed using MEDLINE searches. In addition, relevant articles from non-indexed journals were identified with Google Scholar. Since their beginning over 30 years ago, trauma registries have not fully been established in most developing countries. The following elements play key roles in the creation of trauma data bank: 1) study design, 2) inclusion and exclusion criteria, 3) collected variables, 4) registry software, 5) registry staff and training, and 6) data management strategies. By reviews in the articles, guidelines for the design and implementation of trauma registries are given. The final goal of this review is to make an application to establishment the futures of Korean Trauma Data Bank System.
Developing Countries ; Policy Making ; Quality of Life ; Registries

Severe asthma is characterized by poor asthma control and frequent exacerbation despite high degree of medication. Severe asthma leads to not only increased morbidity and mortality but high socioeconomic burden. To date, several research networks have been organized to understand the clinical and pathophysiological characteristics of severe asthma. These groups organized multicenter registries and collected both clinical and biological information. The results of these groups revealed that severe asthma is a very heterogeneous entity, which could not be defined based on a single feature. Various phenotypes of asthma has been identified based on clinical, inflammatory and immune responses. To understand severe asthma more drastically in consideration of many phenotypes, cluster analysis and endotyping severe asthma have been tried. Although uncontrolled inflammation and airway remodeling underlies the development of severe asthma, much is not known about its pathomechanisms. This review discusses the current understanding of the clinical and pathogenic mechanisms of severe asthma based on the recent publications.
Airway Remodeling ; Asthma ; Inflammation ; Phenotype ; Registries

While trauma registries provide the mechanisms to collect comprehensive, timely and accurate data related to the injuries and evaluate trauma care systems, they have not been established in most developing countries. On the other hand, in complex projects that have large aims, a logical framework approach (LFA) can help summarize and describe the multiple branches of the project systematically, and elucidate the main goals, extensive objectives, activities and expected outcomes. Therefore a LFA can be used to design and guide trauma registry project management, to integrate the cultural, clinical and capacity variations among countries; and to ensure early alignment of the project's design and evaluation.
Clinical Coding ; Humans ; Registries ; Wounds and Injuries

OBJECTIVETo strengthen the current Injury Surveillance System (IS System) in order to better monitor injury conditions, improve protection ways and promote safety.

METHODSAt first we carried out a study to evaluate the frameworks of IS System in the developed countries. Then all the available documents from World Health Organization, Eastern Mediterranean Regional Organization, as well as Minister of Health and Medical Education concerning Iran were reviewed. Later a national stakeholder's consultation was held to collect opinions and views. A national workshop was also intended for provincial representatives from 41 universities to identify the barriers and limitations of the existing program and further to strengthen injury surveillance.

RESULTSThe evaluation of the current IS System revealed many problems, mainly presented as lack of accurate pre- and post-hospital death registry, need of precise injury data registry in outpatient medical centers, incomplete injury data registry in hospitals and lack of accuracy in definition of variables in injury registry. The five main characteristics of current IS System including flexibility, acceptability, simplicity, usefulness and timeliness were evaluated as moderate by experts.

CONCLUSIONSMajor revisions must be considered in the current IS System in Iran. The following elements should be added to the questionnaire: identifier, manner of arrival to the hospital, situation of the injured patient, consumption of alcohol and opioids, other involved participants in the accident, intention, severity and site of injury, side effects of surgery and medication, as well as one month follow-up results. Data should be collected from 10% of all hospitals in Iran and analyzed every 3 months. Simultaneously data should be online to be retrieved by researches.