Pub Date : 2024-03-04eCollection Date: 2024-03-01DOI: 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.
{"title":"Subjective health and psychosomatic complaints of children and adolescents in Germany: Results of the HBSC study 2009/10 - 2022.","authors":"Franziska Reiß, Steven Behn, Michael Erhart, Lisa Strelow, Anne Kaman, Veronika Ottová-Jordan, Ludwig Bilz, Irene Moor, Ulrike Ravens-Sieberer","doi":"10.25646/11868","DOIUrl":"10.25646/11868","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":73767,"journal":{"name":"Journal of health monitoring","volume":"9 1","pages":"7-22"},"PeriodicalIF":0.0,"publicationDate":"2024-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10977472/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140337917","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}
Pub Date : 2024-03-04eCollection Date: 2024-03-01DOI: 10.25646/11866
Irene Moor, Martin Weber, Matthias Richter
{"title":"Child and adolescent health - Resources and potential of the international 'Health Behaviour in School-aged Children (HBSC)' study.","authors":"Irene Moor, Martin Weber, Matthias Richter","doi":"10.25646/11866","DOIUrl":"10.25646/11866","url":null,"abstract":"","PeriodicalId":73767,"journal":{"name":"Journal of health monitoring","volume":"9 1","pages":"3-6"},"PeriodicalIF":0.0,"publicationDate":"2024-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10977467/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140337914","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}
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.
{"title":"Health literacy of students in Germany - Results of the HBSC study 2022.","authors":"Saskia Sendatzki, Ronja Maren Helmchen, Irene Moor, Gorden Sudeck, Kevin Dadaczynski, Katharina Rathmann","doi":"10.25646/11870","DOIUrl":"10.25646/11870","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>The results highlight the need for target group-specific measures to promote young people's HL, which address individual and organisational aspects of HL.</p>","PeriodicalId":73767,"journal":{"name":"Journal of health monitoring","volume":"9 1","pages":"23-41"},"PeriodicalIF":0.0,"publicationDate":"2024-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10977471/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140338550","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}
Pub Date : 2024-03-04eCollection Date: 2024-03-01DOI: 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.
{"title":"Concept and methodology of the Health Behaviour in School-aged Children (HBSC) study - Insights into the current 2022 survey and trends in Germany.","authors":"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","doi":"10.25646/11878","DOIUrl":"10.25646/11878","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Method: </strong>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).</p><p><strong>Discussion: </strong>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.</p>","PeriodicalId":73767,"journal":{"name":"Journal of health monitoring","volume":"9 1","pages":"99-117"},"PeriodicalIF":0.0,"publicationDate":"2024-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10977469/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140337915","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}
Pub Date : 2024-03-04eCollection Date: 2024-03-01DOI: 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.
{"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":"9 1","pages":"62-78"},"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}
Pub Date : 2024-01-17eCollection Date: 2024-01-01DOI: 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.
{"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":"9 Suppl 1","pages":"2-10"},"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}
Pub Date : 2023-12-13eCollection Date: 2023-12-01DOI: 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.
{"title":"Research on Rare Diseases in Germany - The cancer predisposition syndrome registry.","authors":"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","doi":"10.25646/11828","DOIUrl":"10.25646/11828","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":73767,"journal":{"name":"Journal of health monitoring","volume":"8 4","pages":"17-23"},"PeriodicalIF":0.0,"publicationDate":"2023-12-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10880488/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139934483","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}
Pub Date : 2023-12-13eCollection Date: 2023-12-01DOI: 10.25646/11826
Angela Fehr, Franziska Prütz
{"title":"Rare diseases: a challenge for medicine and public health.","authors":"Angela Fehr, Franziska Prütz","doi":"10.25646/11826","DOIUrl":"10.25646/11826","url":null,"abstract":"","PeriodicalId":73767,"journal":{"name":"Journal of health monitoring","volume":"8 4","pages":"3-6"},"PeriodicalIF":0.0,"publicationDate":"2023-12-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10790412/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139486707","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}
Pub Date : 2023-12-13eCollection Date: 2023-12-01DOI: 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":"8 4","pages":"24-30"},"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}
Pub Date : 2023-12-13eCollection Date: 2023-12-01DOI: 10.25646/11746
Miriam Schlangen, Katharina Heuing
Background: Rare diseases are a heterogeneous group of complex clinical patterns, which more often than not run a chronic course. The fact that they are rare complicates the provision of medical care for the specific diseases.
Results: In the field of action titled 'Care, Centres, Networks' of its National Action Plan, the National Action League for People with Rare Diseases recommends the formation of a three-level, interconnected centre model. This form of care was investigated in two large research projects. It was shown that the time to diagnosis was markedly reduced. Commissioned by the Federal Ministry of Health, the expert report on the health status of people with rare diseases in Germany issued in 2023 concludes that the medical care provided to this group of people has improved markedly since the National Action Plan was introduced. The establishment of the Centres for Rare Diseases (ZSE, Zentren für Seltene Erkrankungen) is seen as the most important development. However, it is noted that there is still a lack of coordinated care provision pathways for referring patients to the appropriate facilities.
Conclusion: The provision of care to people with rare diseases has improved upon the implementation of the measures from the National Action Plan. In a next step, care provision pathways must be established across sector boundaries. Challenges remain in the area of psychosocial care and the long-term securing of funding for these structures.
背景:罕见病是一组具有复杂临床模式的异质性疾病,多为慢性病。罕见病这一事实使得为特定疾病提供医疗服务变得更加复杂:全国罕见病患者行动联盟在其《国家行动计划》中题为 "护理、中心、网络 "的行动领域中,建议建立一个三级互联中心模式。两个大型研究项目对这种护理形式进行了调查。结果表明,诊断时间明显缩短。受联邦卫生部委托,2023 年发布的关于德国罕见病患者健康状况的专家报告认为,自《国家行动计划》出台以来,为这一群体提供的医疗服务有了明显改善。罕见疾病中心(ZSE, Zentren für Seltene Erkrankungen)的成立被视为最重要的进展。然而,人们注意到,在将病人转介到适当的机构方面,仍然缺乏协调的护理服务途径:结论:在实施《国家行动计划》的各项措施后,为罕见病患者提供的医疗服务有所改善。下一步,必须建立跨部门的护理提供途径。在社会心理护理领域以及为这些机构提供长期资金保障方面仍存在挑战。
{"title":"Rare diseases in Germany - Developments in the status of medical care.","authors":"Miriam Schlangen, Katharina Heuing","doi":"10.25646/11746","DOIUrl":"10.25646/11746","url":null,"abstract":"<p><strong>Background: </strong>Rare diseases are a heterogeneous group of complex clinical patterns, which more often than not run a chronic course. The fact that they are rare complicates the provision of medical care for the specific diseases.</p><p><strong>Results: </strong>In the field of action titled 'Care, Centres, Networks' of its National Action Plan, the National Action League for People with Rare Diseases recommends the formation of a three-level, interconnected centre model. This form of care was investigated in two large research projects. It was shown that the time to diagnosis was markedly reduced. Commissioned by the Federal Ministry of Health, the expert report on the health status of people with rare diseases in Germany issued in 2023 concludes that the medical care provided to this group of people has improved markedly since the National Action Plan was introduced. The establishment of the Centres for Rare Diseases (ZSE, Zentren für Seltene Erkrankungen) is seen as the most important development. However, it is noted that there is still a lack of coordinated care provision pathways for referring patients to the appropriate facilities.</p><p><strong>Conclusion: </strong>The provision of care to people with rare diseases has improved upon the implementation of the measures from the National Action Plan. In a next step, care provision pathways must be established across sector boundaries. Challenges remain in the area of psychosocial care and the long-term securing of funding for these structures.</p>","PeriodicalId":73767,"journal":{"name":"Journal of health monitoring","volume":"8 4","pages":"7-16"},"PeriodicalIF":0.0,"publicationDate":"2023-12-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10792297/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139486704","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}