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Trends in health inequalities in childhood and adolescence in Germany: Results of the HBSC study 2009/10 - 2022. 德国儿童和青少年健康不平等趋势:2009/10 - 2022 年 HBSC 研究结果。
Pub Date : 2024-03-04 eCollection Date: 2024-03-01 DOI: 10.25646/11876
Irene Moor, Max Herke, Jenny Markert, Marie Böhm, Franziska Reiß, Ludwig Bilz, Gorden Sudeck, Kristina Winter

Background: Many studies have identified health inequalities in childhood and adolescence. However, it is unclear how these have developed in recent years, particularly since the COVID-19 pandemic.

Methods: Analyses are based on the German data from the international Health Behaviour in School-aged Children (HBSC) study from 2009/10 (n = 5,005), 2013/14 (n = 5,961), 2017/18 (n = 4,347), and 2022 (n = 6,475). A total of 21,788 students aged approximately between 11 and 15 years were included. Socioeconomic status (SES) was assessed using the Family Affluence Scale (FAS). Several health indicators were analysed stratified by gender using bivariate and multivariate analysis methods.

Results: In 2022, there are clear socioeconomic inequalities in life satisfaction, self-rated health, fruit and vegetable consumption, and physical activity. These inequalities remained largely constant or increased between 2009/10 and 2022. Between 2017/18 and 2022, no significant changes in inequalities were found.

Conclusions: Health inequalities are persistent and reduce the chances of growing up healthy. There is no evidence that inequalities in the analysed outcomes have changed during the pandemic period (between 2017/18 and 2022). Rather, the changes in the health indicators seem to affect all adolescents in a similar way.

背景:许多研究发现了儿童和青少年时期的健康不平等现象。然而,近年来,尤其是 COVID-19 大流行以来,这些不平等现象是如何发展的尚不清楚:分析基于国际学龄儿童健康行为(HBSC)研究的德国数据,这些数据分别来自 2009/10(n = 5,005)、2013/14(n = 5,961)、2017/18(n = 4,347)和 2022(n = 6,475)年。共纳入 21788 名年龄约在 11 至 15 岁之间的学生。社会经济地位(SES)通过家庭富裕程度量表(FAS)进行评估。采用双变量和多变量分析方法对多个健康指标进行了性别分层分析:2022 年,在生活满意度、自我健康评价、水果和蔬菜消费以及体育锻炼方面存在明显的社会经济不平等。在 2009/10 年至 2022 年期间,这些不平等现象基本保持不变或有所增加。在 2017/18 年至 2022 年期间,未发现不平等现象有显著变化:结论:健康不平等现象持续存在,并减少了健康成长的机会。没有证据表明,在大流行期间(2017/18 年至 2022 年),所分析结果中的不平等现象发生了变化。相反,健康指标的变化似乎以类似的方式影响着所有青少年。
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引用次数: 0
Child and adolescent health - Resources and potential of the international 'Health Behaviour in School-aged Children (HBSC)' study. 儿童和青少年健康--国际 "学龄儿童健康行为(HBSC)"研究的资源和潜力。
Pub Date : 2024-03-04 eCollection Date: 2024-03-01 DOI: 10.25646/11866
Irene Moor, Martin Weber, Matthias Richter
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引用次数: 0
Subjective health and psychosomatic complaints of children and adolescents in Germany: Results of the HBSC study 2009/10 - 2022. 德国儿童和青少年的主观健康和心身疾病:2009/10 - 2022 年 HBSC 研究结果。
Pub Date : 2024-03-04 eCollection Date: 2024-03-01 DOI: 10.25646/11868
Franziska Reiß, Steven Behn, Michael Erhart, Lisa Strelow, Anne Kaman, Veronika Ottová-Jordan, Ludwig Bilz, Irene Moor, Ulrike Ravens-Sieberer

Background: Subjective health and well-being are important health indicators in childhood and adolescence. This article shows current results and trends over time between 2009/10 and 2022.

Methods: The Health Behaviour in School-aged Children (HBSC) study examined subjective health, life satisfaction and psychosomatic complaints of N = 21,788 students aged 11 to 15 years in the school years 2009/10, 2013/14, 2017/18 and in the calendar year 2022. Multivariate regression analyses show the associations between sociodemographic characteristics and well-being in 2022, as well as trends since 2009/10.

Results: The majority of children and adolescents indicate a good subjective health and high life satisfaction. About half of the girls and one third of the boys report multiple psychosomatic health complaints, with a clear increase over time. Older adolescents, girls and gender diverse adolescents are at an increased risk of poor well-being. Subjective health and life satisfaction varied between 2009/10 and 2022, with a significant deterioration between 2017/18 and 2022.

Conclusions: The high proportion of children and adolescents with psychosomatic complaints, as well as the observed gender and age differences, underline the need for target group-specific prevention, health promotion and continuous health monitoring.

背景:主观健康和幸福感是儿童和青少年时期的重要健康指标。本文介绍了目前的结果以及 2009/10 年至 2022 年期间的发展趋势:学龄儿童健康行为(HBSC)研究调查了2009/10、2013/14、2017/18学年和2022日历年N = 21788名11至15岁学生的主观健康、生活满意度和心身疾病。多变量回归分析显示了社会人口特征与2022年幸福感之间的关联,以及自2009/10学年以来的趋势:结果:大多数儿童和青少年的主观健康状况良好,生活满意度高。约有一半的女孩和三分之一的男孩报告有多种心身健康问题,且随着时间的推移明显增加。年龄较大的青少年、女孩和性别不同的青少年的健康状况较差的风险较高。主观健康和生活满意度在 2009/10 年至 2022 年期间有所变化,在 2017/18 年至 2022 年期间显著恶化:患有心身疾病的儿童和青少年比例很高,而且观察到了性别和年龄差异,这凸显了针对目标群体进行预防、健康促进和持续健康监测的必要性。
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引用次数: 0
Health literacy of students in Germany - Results of the HBSC study 2022. 德国学生的健康素养 - 2022 年 HBSC 研究结果。
Pub Date : 2024-03-04 eCollection Date: 2024-03-01 DOI: 10.25646/11870
Saskia Sendatzki, Ronja Maren Helmchen, Irene Moor, Gorden Sudeck, Kevin Dadaczynski, Katharina Rathmann

Background: Health literacy (HL) encompasses knowledge and skills for dealing critically and confidently with health information in individual and social contexts. Current studies show that a high proportion of children and adolescents have limited health literacy, depending on aspects of their social background. Health literacy is considered an important factor influencing health. Little is known about the development of health literacy over time and its connection with psychosomatic complaints in young people.

Methods: Based on the results of the Health Behaviour in School-aged Children (HBSC) study, this article focusses on the level of HL in 11-, 13-, and 15-year-old students (N = 6,475) over time and taking social differences into account. Finally, the relationship between HL and psychosomatic complaints is analysed. Univariate, bivariate, and multivariate analyses were carried out for this purpose.

Results: At 24.4 %, slightly more students have low HL in 2022 than in 2017/18 (21.4 %). There are differences in HL according to gender, age, type of school, and family affluence. Low HL is associated with a high psychosomatic burden.

Conclusions: The results highlight the need for target group-specific measures to promote young people's HL, which address individual and organisational aspects of HL.

背景:健康素养(HL)包括在个人和社会环境中批判性地、自信地处理健康信息的知识和技能。目前的研究表明,很大一部分儿童和青少年的健康素养有限,这与他们的社会背景有关。健康素养被认为是影响健康的一个重要因素。但人们对青少年健康素养的长期发展及其与心身疾病的关系知之甚少:本文以学龄儿童健康行为(HBSC)研究的结果为基础,重点研究了 11、13 和 15 岁学生(人数=6475)随着时间推移的健康素养水平,并考虑了社会差异。最后,分析了 HL 与心身疾病之间的关系。为此进行了单变量、双变量和多变量分析:2022年HL偏低的学生比例为24.4%,略高于2017/18学年(21.4%)。不同性别、年龄、学校类型和家庭富裕程度的学生在 HL 方面存在差异。低 HL 与高心理负担有关:研究结果突出表明,有必要采取针对特定目标群体的措施来促进青少年的健康生活,这些措施应涉及健康生活的个人和组织方面。
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引用次数: 0
Concept and methodology of the Health Behaviour in School-aged Children (HBSC) study - Insights into the current 2022 survey and trends in Germany. 学龄儿童健康行为(HBSC)研究的概念和方法--深入了解德国目前的 2022 年调查和趋势。
Pub Date : 2024-03-04 eCollection Date: 2024-03-01 DOI: 10.25646/11878
Kristina Winter, Irene Moor, Jenny Markert, Ludwig Bilz, Jens Bucksch, Kevin Dadaczynski, Saskia M Fischer, Ronja M Helmchen, Anne Kaman, Juliane Möckel, Katharina Rathmann, Ulrike Ravens-Sieberer, Franziska Reiß, Theresa Schierl, Raphael Schütz, Saskia Sendatzki, Elisabeth Stürmer, Gorden Sudeck, Matthias Richter

Background: Health Behaviour in School-aged Children (HBSC) is one of the largest international studies on child and adolescent health and cooperates with the World Health Organization (WHO). In Germany, adolescents aged 11, 13 and 15 are surveyed every four years about their health, health behaviour and social conditions. This article describes the HBSC study and in particular the methodology of the current 2022 survey and prior surveys conducted between 2009/10 and 2017/18.

Method: 174 schools with a total of 6,475 students participated in the 2022 survey. The survey was conducted using questionnaires and covered a wide range of topics (including mental health, physical activity, bullying experiences, social determinants of health and experiences related to COVID-19). The 2022 survey was complemented by a school principal survey (N = 160). In addition to the current sample, the samples of the three previous surveys with representative data for Germany are presented: 2009/10 (N = 5,005), 2013/14 (N = 5,961) and 2017/18 (N = 4,347).

Discussion: The health of children and adolescents is of great public health importance. The HBSC study makes a substantial contribution by providing internationally comparable results, analysing trends, and providing stakeholders with comprehensive and representative health monitoring data.

研究背景学龄儿童健康行为研究(HBSC)是国际上最大的儿童和青少年健康研究之一,与世界卫生组织(WHO)有合作关系。在德国,11、13 和 15 岁的青少年每四年接受一次有关其健康、健康行为和社会状况的调查。本文介绍了 HBSC 研究,特别是当前 2022 年调查以及 2009/10 年至 2017/18 年期间进行的前几次调查的方法:174所学校共6475名学生参与了2022年调查。调查采用问卷形式进行,涵盖了广泛的主题(包括心理健康、体育活动、欺凌经历、健康的社会决定因素以及与 COVID-19 相关的经历)。在 2022 年调查的基础上,还进行了校长调查(N = 160)。除当前样本外,还介绍了德国具有代表性数据的前三次调查的样本:2009/10(N = 5,005)、2013/14(N = 5,961)和2017/18(N = 4,347):儿童和青少年的健康对公共卫生具有重要意义。通过提供具有国际可比性的结果、分析趋势以及为利益相关者提供全面且具有代表性的健康监测数据,健康状况监测研究做出了重大贡献。
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引用次数: 0
Physical activity of older children and adolescents in Germany - Results of the HBSC study 2022 and trends since 2009/10. 德国老年儿童和青少年的体育活动--2022 年 HBSC 研究结果及 2009/10 年以来的趋势。
Pub Date : 2024-03-04 eCollection Date: 2024-03-01 DOI: 10.25646/11874
Jens Bucksch, Juliane Möckel, Anne Kaman, Gorden Sudeck

Background: Physical activity is central to health, beginning in childhood and adolescence, and regular monitoring provides important information for strategic decisions on promoting physical activity in Germany.

Methods: The current survey cycle of the Health Behaviour in School-aged Children (HBSC) study gives an insight into the prevalence of the indicators daily recommended physical activity, high and low physical activity, and sporting activity among students aged between 11 and 15 for 2022. In addition, the data is compared to the survey cycles of the 2009/10, 2013/14, and 2017/18 school years and analysed over time.

Results: The results of the current survey cycle show that 10.8 % of girls, 20.9 % of boys, and 12.4 % of gender diverse adolescents fulfil the daily physical activity recommendation. There are also major gender-specific differences for the other indicators. The group of gender diverse adolescents needs to be analysed further. The changes over time between 2009/10 and 2022 are relatively small. While girls' physical activity habits decreased slightly for the various indicators between 2009/10 and 2022, boys' prevalence remained relatively stable over the same period.

Conclusions: Overall, in part due to the effects of the various COVID-19 lockdowns, the need for effective and population-based measures to promote physical activity in childhood and adolescence remains high.

背景:从儿童和青少年时期开始,体育锻炼对健康至关重要:在德国,定期监测为促进体育活动的战略决策提供了重要信息:方法:学龄儿童健康行为(HBSC)研究的当前调查周期揭示了 2022 年 11-15 岁学生中每日推荐体育活动、高和低体育活动以及体育活动等指标的流行情况。此外,数据还与2009/10、2013/14和2017/18学年的调查周期进行了比较,并对不同时期的数据进行了分析:本调查周期的结果显示,10.8% 的女生、20.9% 的男生和 12.4% 的不同性别青少年达到了每日体育锻炼建议量。在其他指标方面也存在较大的性别差异。需要进一步分析不同性别青少年群体的情况。2009/10 年至 2022 年期间的变化相对较小。在 2009/10 年至 2022 年期间,女孩的体育锻炼习惯在各项指标上略有下降,而同期男孩的体育锻炼习惯则保持相对稳定:总体而言,部分由于 COVID-19 各项封锁的影响,仍然非常需要采取有效的、基于人口的措施来促进儿童和青少年的体育活动。
{"title":"Physical activity of older children and adolescents in Germany - Results of the HBSC study 2022 and trends since 2009/10.","authors":"Jens Bucksch, Juliane Möckel, Anne Kaman, Gorden Sudeck","doi":"10.25646/11874","DOIUrl":"10.25646/11874","url":null,"abstract":"<p><strong>Background: </strong>Physical activity is central to health, beginning in childhood and adolescence, and regular monitoring provides important information for strategic decisions on promoting physical activity in Germany.</p><p><strong>Methods: </strong>The current survey cycle of the Health Behaviour in School-aged Children (HBSC) study gives an insight into the prevalence of the indicators daily recommended physical activity, high and low physical activity, and sporting activity among students aged between 11 and 15 for 2022. In addition, the data is compared to the survey cycles of the 2009/10, 2013/14, and 2017/18 school years and analysed over time.</p><p><strong>Results: </strong>The results of the current survey cycle show that 10.8 % of girls, 20.9 % of boys, and 12.4 % of gender diverse adolescents fulfil the daily physical activity recommendation. There are also major gender-specific differences for the other indicators. The group of gender diverse adolescents needs to be analysed further. The changes over time between 2009/10 and 2022 are relatively small. While girls' physical activity habits decreased slightly for the various indicators between 2009/10 and 2022, boys' prevalence remained relatively stable over the same period.</p><p><strong>Conclusions: </strong>Overall, in part due to the effects of the various COVID-19 lockdowns, the need for effective and population-based measures to promote physical activity in childhood and adolescence remains high.</p>","PeriodicalId":73767,"journal":{"name":"Journal of health monitoring","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10977466/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140337916","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Utilisation of dental services by refugees in Germany: Results of the population-based RESPOND survey. 德国难民使用牙科服务的情况:基于人口的 RESPOND 调查结果。
Pub Date : 2024-01-17 eCollection Date: 2024-01-01 DOI: 10.25646/11844
Kayvan Bozorgmehr, Maren Hintermeier, Louise Biddle, Claudia Hövener, Nora Gottlieb

Background: The utilisation of outpatient dental services is an important indicator for monitoring healthcare provision in Germany. In the general population, the 12-month prevalence of dental service utilization is 82.2 %. For refugees, this indicator has hardly been measured, although studies suggest an objectively high need for dental care.

Methodology: As part of the population-based cross-sectional RESPOND study (2018), self-reported health and healthcare, including the use of dental services, was assessed in three representative, random samples of refugees residing in reception and shared accommodation centres in Baden-Württemberg and Berlin.

Results: The indicator was available for 68.8 % (594) of the 863 surveyed refugees. Overall, 38.2 % of the respondents stated that they had utilised dental services in the previous 12 months, whereas 41.4 % had never used any dental care in Germany.

Conclusions: The utilisation of dental services among refugees is very low compared to the level of utilisation in the general population. It reflects a discrepancy between access and needs.

背景在德国,牙科门诊服务的使用率是监测医疗服务提供情况的一项重要指标。在普通人群中,12 个月的牙科服务使用率为 82.2%。尽管研究表明难民对牙科保健的需求客观上很高,但几乎没有对难民的这一指标进行过测量:作为基于人口的横断面 RESPOND 研究(2018 年)的一部分,对居住在巴登-符腾堡州和柏林的接待中心和合住中心的三个具有代表性的随机难民样本进行了自我报告的健康和医疗保健(包括牙科服务的使用情况)的评估:在接受调查的 863 名难民中,68.8%(594 人)的人提供了这一指标。总体而言,38.2%的受访者表示在过去12个月中使用过牙科服务,而41.4%的受访者从未在德国使用过任何牙科服务:与普通人群相比,难民牙科服务的使用率非常低。结论:与普通人群相比,难民对牙科服务的利用率非常低,这反映出牙科服务的获取与需求之间存在差异。
{"title":"Utilisation of dental services by refugees in Germany: Results of the population-based RESPOND survey.","authors":"Kayvan Bozorgmehr, Maren Hintermeier, Louise Biddle, Claudia Hövener, Nora Gottlieb","doi":"10.25646/11844","DOIUrl":"10.25646/11844","url":null,"abstract":"<p><strong>Background: </strong>The utilisation of outpatient dental services is an important indicator for monitoring healthcare provision in Germany. In the general population, the 12-month prevalence of dental service utilization is 82.2 %. For refugees, this indicator has hardly been measured, although studies suggest an objectively high need for dental care.</p><p><strong>Methodology: </strong>As part of the population-based cross-sectional RESPOND study (2018), self-reported health and healthcare, including the use of dental services, was assessed in three representative, random samples of refugees residing in reception and shared accommodation centres in Baden-Württemberg and Berlin.</p><p><strong>Results: </strong>The indicator was available for 68.8 % (594) of the 863 surveyed refugees. Overall, 38.2 % of the respondents stated that they had utilised dental services in the previous 12 months, whereas 41.4 % had never used any dental care in Germany.</p><p><strong>Conclusions: </strong>The utilisation of dental services among refugees is very low compared to the level of utilisation in the general population. It reflects a discrepancy between access and needs.</p>","PeriodicalId":73767,"journal":{"name":"Journal of health monitoring","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-01-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10812290/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139572234","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Research on Rare Diseases in Germany - The cancer predisposition syndrome registry. 德国罕见疾病研究 - 癌症易感综合征登记处。
Pub Date : 2023-12-13 eCollection Date: 2023-12-01 DOI: 10.25646/11828
Christina M Dutzmann, Nathalie E Palmaers, Lucas J Müntnich, Farina J Strüwe, Judith Penkert, Birte Sänger, Beatrice Hoffmann, Anja Karow, Christina Reimer, Tanja Gerasimov, Marena R Niewisch, Christian P Kratz

Background: Cancer predisposition syndromes (CPS) are rare diseases that are associated with an increased risk of cancer due to genetic alterations. At least 8 % of all cases of childhood cancer are attributable to CPS [1, 2]. The CPS registry was launched in 2017 to learn more about CPS and to improve the care to those afflicted by these diseases.

Methods: This is an internationally networked registry with associated accompanying studies that investigate cancer risks and spectra, the possibilities of cancer prevention, early detection and therapy.

Results: For several of these syndromes, new insights into the cancer risks and cancer types as well as factors modifying cancer risk have been gained. In addition, experimental, psycho-oncological, preclinical and clinical studies were initiated.

Conclusions: The CPS registry is an example of how progress can be made within a short period of time to the benefit of individuals with rare diseases through systematic data collection and research.

背景:癌症易感综合征(CPS)是一种罕见疾病,由于基因改变而导致患癌风险增加。在所有儿童癌症病例中,至少有 8% 可归因于 CPS [1,2]。CPS 登记于 2017 年启动,旨在了解更多有关 CPS 的信息,并改善对这些疾病患者的护理:方法:这是一个国际联网的登记处,与相关的配套研究一起调查癌症风险和谱系、癌症预防的可能性、早期检测和治疗:结果:对于其中几种综合征,人们对癌症风险、癌症类型以及改变癌症风险的因素有了新的认识。此外,还启动了实验、肿瘤心理、临床前和临床研究:CPS登记处是一个范例,说明了如何通过系统的数据收集和研究,在短时间内取得进展,使罕见病患者受益。
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引用次数: 0
Rare diseases: a challenge for medicine and public health. 罕见疾病:医学和公共卫生面临的挑战。
Pub Date : 2023-12-13 eCollection Date: 2023-12-01 DOI: 10.25646/11826
Angela Fehr, Franziska Prütz
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引用次数: 0
Research on Rare Diseases in Germany - The GAIN Registry: a registry for individuals with congenital multi-organ autoimmune diseases. 德国罕见疾病研究 - GAIN 登记处:先天性多器官自身免疫疾病患者登记处。
Pub Date : 2023-12-13 eCollection Date: 2023-12-01 DOI: 10.25646/11732
Cynthia Stapornwongkul, Alexandra Nieters, Paulina Staus, Stephan Rusch, Anita Delor, Ulrich Baumann, Julius Wehrle, Melanie Boerries, Markus G Seidel, Bodo Grimbacher, Gerhard Kindle

Background: Patient registries are an important tool for networking medical caregivers and research, especially in the field of rare diseases. Individuals afflicted by multi-organ autoimmune diseases typically suffer from inflammation of multiple organs.

Project: GAIN (German genetic multi-organ Auto-Immunity Network) is the German network for research and therapy optimisation for individuals with congenital multi-organ autoimmune diseases. As a sub-project of the network, the registry systematically collects data from this patient group and makes it available for research purposes.

Results: A data set was developed and made available for the GAIN Registry that can map the complex clinical status of persons with multi-organ autoimmune diseases. Data from 486 individuals have been documented to date.

Conclusions: The GAIN register allows for a very comprehensive documentation that clearly goes beyond previous approaches, e.g. by linking it to biosamples collected in the consortium. The planned inclusion of patients in the documentation, e.g. of data on quality of life, opens up a new field.

背景:患者登记是医疗护理人员和研究人员建立联系的重要工具,尤其是在罕见病领域。多器官自身免疫性疾病患者通常患有多器官炎症:GAIN(德国遗传性多器官自身免疫网络)是德国针对先天性多器官自身免疫疾病患者的研究和治疗优化网络。作为该网络的一个子项目,登记处系统地收集了这一患者群体的数据,并将其用于研究目的:结果:为 GAIN 登记处开发并提供了一个数据集,该数据集能够反映多器官自身免疫疾病患者复杂的临床状况。迄今已记录了 486 人的数据:GAIN登记册可以提供非常全面的记录,这显然超越了以往的方法,例如通过将其与联盟收集的生物样本联系起来。计划将患者纳入记录范围,例如生活质量数据,这开辟了一个新的领域。
{"title":"Research on Rare Diseases in Germany - The GAIN Registry: a registry for individuals with congenital multi-organ autoimmune diseases.","authors":"Cynthia Stapornwongkul, Alexandra Nieters, Paulina Staus, Stephan Rusch, Anita Delor, Ulrich Baumann, Julius Wehrle, Melanie Boerries, Markus G Seidel, Bodo Grimbacher, Gerhard Kindle","doi":"10.25646/11732","DOIUrl":"10.25646/11732","url":null,"abstract":"<p><strong>Background: </strong>Patient registries are an important tool for networking medical caregivers and research, especially in the field of rare diseases. Individuals afflicted by multi-organ autoimmune diseases typically suffer from inflammation of multiple organs.</p><p><strong>Project: </strong>GAIN (German genetic multi-organ Auto-Immunity Network) is the German network for research and therapy optimisation for individuals with congenital multi-organ autoimmune diseases. As a sub-project of the network, the registry systematically collects data from this patient group and makes it available for research purposes.</p><p><strong>Results: </strong>A data set was developed and made available for the GAIN Registry that can map the complex clinical status of persons with multi-organ autoimmune diseases. Data from 486 individuals have been documented to date.</p><p><strong>Conclusions: </strong>The GAIN register allows for a very comprehensive documentation that clearly goes beyond previous approaches, e.g. by linking it to biosamples collected in the consortium. The planned inclusion of patients in the documentation, e.g. of data on quality of life, opens up a new field.</p>","PeriodicalId":73767,"journal":{"name":"Journal of health monitoring","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-12-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10790410/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139486712","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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Journal of health monitoring
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