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Cohort Profiles
Cohort profile: the KDCA-Tuberculosis-NHIS cohort linking tuberculosis surveillance and health insurance data in Korea
Dawoon Jeong, Jinsun Kim, Seung Won Lee, Hongjo Choi, Hojoon Sohn, Jieun Kim, Hyewon Lee, Hyeran Jeong, Seung Eun Lee, Young-joon Park, Jaiyong Kim, Eun Mi Kim, Minji Koo, Hoyeon Jang, Young Ae Kang
Epidemiol Health. 2025;47:e2025071.   Published online December 13, 2025
DOI: https://doi.org/10.4178/epih.e2025071
  • 6,198 View
  • 111 Download
  • 5 Web of Science
  • 3 Crossref
AbstractAbstract AbstractSummary PDFSupplementary Material
Abstract
Despite a steady decline in incidence, tuberculosis (TB) remains a substantial public health burden in Korea, particularly among older adults. Existing national TB surveillance systems lack sufficiently comprehensive data to assess long-term outcomes and health disparities. The K-TB-N cohort integrates data from 3 national sources: the Korean Tuberculosis Surveillance System (2011-2022), the National Health Insurance Database (2010-2022), and mortality data from Statistics Korea (2010-2022). After data cleaning and linkage, the final cohort included 373,812 patients (375,440 episodes) with either drug-susceptible TB or drug- resistant TB. TB notifications declined by approximately 60% over the study period, while the median patient age continued to rise. Treatment success improved over time, accompanied by reductions in lost to follow-up. However, mortality during treatment increased, with more than half of deaths attributed to non-TB causes such as pneumonia, cancer, and cardiovascular disease. Post-treatment mortality also remained high, particularly among patients with drug-resistant TB. The K-TB-N cohort provides a comprehensive, linked dataset for advancing research on TB epidemiology, treatment outcomes, comorbidities, and health disparities. It enables evaluations of public health interventions, long-term prognosis, and strategies for post-TB care. This cohort will remain a valuable resource for shaping data-driven TB control policies in aging and high-burden settings.
Summary
Korean summary
- K-TB-N 코호트는 결핵 신고자료, 건강보험청구자료, 통계청 사망자료를 연계한 국내 최초의 전국단위 결핵 통합자료 코호트이다. - 이 코호트를 결핵 치료 성과와 치료 종료 이후 사망을 포함한 장기예후 분석이 가능하다. - 코호트에 포함된 2011-2022년 사이, 결핵 발생은 60% 감소하였고, 결핵 환자의 평균 연령은 증가하였다. 결핵 치료 중 사망율은 증가하였는데, 사망원인의 50% 이상은 비결핵성 사망이었다.
Key Message
- The K-TB-N cohort is the first national-level integrated TB cohort in South Korea that combines three distinct datasets, overcoming the limitations of single-source TB registries. - The linkage of clinical data (KTB-Surv), health insurance claims (NHID), and mortality records (Statistics Korea) allows long-term tracking of treatment outcomes and post-treatment mortality. - TB notifications declined by ~60% during the study period, while the median patient age increased. - The mortality during TB treatment rose, with over half of deaths attributed to non-TB causes.

Citations

Citations to this article as recorded by  
  • Suicide risk in people with tuberculosis in Republic of Korea: a nationwide cohort, 2012–2021
    Chiwook Chung, Seung Won Lee, Dawoon Jeong, Hongjo Choi, Hojoon Sohn, Young Ae Kang
    Infectious Diseases of Poverty.2026;[Epub]     CrossRef
  • Clinical outcomes and recurrence after treatment of asymptomatic pulmonary tuberculosis: A nationwide cohort study
    Se Hyun Kwak, Hongjo Choi, Seung Won Lee, Dawoon Jeong, Hojoon Sohn, Young Ae Kang
    International Journal of Infectious Diseases.2026; 169: 108805.     CrossRef
  • Context-dependent risk stratification using a tuberculin skin test induration threshold of ≥ 15 mm in school tuberculosis screening in Hangzhou, China: a historical cohort study
    Xiangjie Meng, Yin Tang, Jun Shou, Nan Jiang, Yu Zhang
    Tropical Medicine and Health.2026;[Epub]     CrossRef
Cohort profile: understanding health service system needs for people with intellectual disability using linked data in New South Wales, Australia
Simone Reppermund, Preeyaporn Srasuebkul, Claire M. Vajdic, Sallie-Anne Pearson, Rachael E. Moorin, Julian N. Trollor
Epidemiol Health. 2024;46:e2024054.   Published online June 12, 2024
DOI: https://doi.org/10.4178/epih.e2024054
  • 15,863 View
  • 194 Download
  • 7 Web of Science
  • 7 Crossref
AbstractAbstract AbstractSummary PDF
Abstract
This cohort profile describes one of the largest linked datasets in the world concerning the health of people with intellectual disability. The cohort comprises a retrospective group of 100,089 individuals with intellectual disability who received disability and/or health services in New South Wales, Australia. Of these participants, 34% were female, with a median age at cohort entry of 3 years (interquartile range, 0-19). A separate comparator cohort included 455,677 individuals, matched by 5-year age group, sex, and residential postcode at a 5:1 ratio. Initial results indicate that between 2001 and 2018, people with intellectual disability experienced more than double the rate of hospitalisations (538 vs. 235 per 1,000 person-years), as well as markedly higher rates of emergency department presentations (707 vs. 379 per 1,000 person-years) and use of ambulatory mental health services (1,012 vs. 157 per 1,000 person-years), relative to the comparator cohort. The largest disparities in hospital admissions were for mental disorders, dialysis, and diseases of the nervous system and sense organs. Furthermore, individuals with intellectual disability had more than double the rate of dispensed medications found in the comparator cohort. Of these medications, 46.6% were for the treatment of nervous system conditions, as opposed to 24.7% for the comparator cohort. The mean±standard deviation age at death was 52±19 years for people with intellectual disability and 64±22 years for the comparator participants.
Summary
Key Message
This cohort study of individuals with intellectual disability is one of the largest internationally looking at health profiles and health service use. The goal is to improve the health and well-being of individuals with intellectual disability by informing the development of services, variations in prescribing practices, and access to preventative health services.

Citations

Citations to this article as recorded by  
  • Contraception use in women with intellectual disability: a retrospective cohort study
    Yunhe Huang, Peiwen Liao, Preeyaporn Srasuebkul, Pramudie Gunaratne, Julian Trollor
    BMJ Sexual & Reproductive Health.2026; 52(3): 176.     CrossRef
  • Addressing the challenges of intellectual disability identification for health policy and research in Australia
    Helen Leonard, Kingsley Wong, Peiwen Liao, Manzoor Khan, Zoe Aitken, Jenny Bourke, Julian N. Trollor, Jenny Downs, Mary-Ann O’Donovan, Anne M. Kavanagh, Preeyaporn Srasuebkul
    Frontiers in Psychiatry.2026;[Epub]     CrossRef
  • Life expectancy of people with intellectual disability: a retrospective cohort study from New South Wales, Australia
    Preeyaporn Srasuebkul, Julian Trofimovs, Julian Trollor
    BMJ Open.2026; 16(2): e110184.     CrossRef
  • Improving the health of people with intellectual disability: past progress and future directions
    Gloria L. Krahn, Julian N. Trollor
    Frontiers in Psychiatry.2026;[Epub]     CrossRef
  • Cancer Incidence in People With Intellectual Disability and Down Syndrome in Australia: A Cohort Study
    Julian Trofimovs, Claire M. Vajdic, Preeyaporn Srasuebkul, Sallie‐Anne Pearson, Julian N. Trollor
    Cancer Medicine.2026;[Epub]     CrossRef
  • Prevalence of psychiatric conditions in people with intellectual disability: A record linkage study in New South Wales, Australia
    Samuel RC Arnold, Yunhe Huang, Preeyaporn Srasuebkul, Rachael C Cvejic, Stefan C Michalski, Julian N Trollor
    Australian & New Zealand Journal of Psychiatry.2025; 59(5): 433.     CrossRef
  • Predictors of mental illness onset in adolescents and adults with intellectual disability: A retrospective cohort study in New South Wales, Australia
    Stefan C Michalski, Yunhe Huang, Preeyaporn Srasuebkul, Rachael C Cvejic, Samuel RC Arnold, Julian N Trollor
    Australian & New Zealand Journal of Psychiatry.2025; 59(12): 1095.     CrossRef
Data Profile
The Korea National Health and Nutrition Examination Survey data linked Cause of Death data
Sungha Yun, Kyungwon Oh
Epidemiol Health. 2022;44:e2022021.   Published online February 9, 2022
DOI: https://doi.org/10.4178/epih.e2022021
  • 43,827 View
  • 838 Download
  • 39 Web of Science
  • 40 Crossref
AbstractAbstract AbstractSummary PDFSupplementary Material
Abstract
The Korea National Health and Nutrition Examination Survey (KNHANES) is a national health survey that is conducted annually to assess the health and and health-related behaviors of Korean population. To utilize KNHANES data to studies of mortality risk factors, the Korea Disease Control and Prevention Agency (KDCA) constructed a database linking KNHANES data to cause-of-death statistics in Statistics Korea, made available to researchers since 2020. The KNHANES data were linked to the Cause of Death Statistics based on resident registration numbers for subjects aged 19 years or older who agreed to link the data. The linkage rate between 2007-2015 National Health and Nutrition Examination Survey and 2007-2019 Cause of Death Statistics was 97.1%. In the linked dataset, the total death rate was 6.6%, of which neoplasms accounted for the highest death rate (32.1%), followed by circulatory system disease (22.7%) and respiratory system disease (11.5%). The linked dataset was made available through the Research Data Center of the KDCA after a review of the research proposal, and will be made available after periodical updates.
Summary
Korean summary
1. 국민건강영양조사 자료가 사망 위험요인 규명 연구에 활용되도록 통계청의 사망원인통계와 연계자료 구축함 2. 2007~2015년 국민건강영양조사와 2007~2019년 사망원인통계의 연계율은 97.1%이었음 3. 국민건강영양조사-사망원인통계 연계자료는 2020년부터 연구자에게 질병관리청 내 학술연구자료처리실를 통해 제공되고 있음
Key Message
1. To utilize the Korea National Health and Nutrition Examination Survey (KNHANES) data to studies of mortality risk factors, the data were linked to the Cause of Death Statistics in the Statistics Korea. 2. The linkage rate between the 2007-2015 KNHANES and the 2007-2019 Cause of Death Statistics was 97.1%. 3. The Korea National Health and Nutrition Examination Survey data linked Cause of Death data have been provided to researchers through the Research Data Center in the Korea Disease Control and Prevention Agency (KDCA) since 2020.

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  • Dietary creatine intake and mental health among the Korean population
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    Nutritional Neuroscience.2026; 29(2): 239.     CrossRef
  • History of suicidality and mortality risk: A nationwide cohort study
    Kyujoon Kwon, Hyunsuk Jeong, Hyeon Woo Yim, Marc N. Potenza
    Journal of Affective Disorders.2026; 393: 120448.     CrossRef
  • Plan and operations of the 10th Korea National Health and Nutrition Examination Survey (2025–2027)
    Sun-Ja Kim, Sihyun Park, Sunja Kim, Suyeon Park, Yoonjung Kim, Yunjung Choi, Sungha Yun, Kyungwon Oh
    Epidemiology and Health.2026; 48: e2026001.     CrossRef
  • Associations between Live Dietary Microbe Intake and Cardiometabolic Health in Korean Adults
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    The Journal of Nutrition.2026; 156(5): 101459.     CrossRef
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    Healthcare.2026; 14(4): 543.     CrossRef
  • Metabolic syndrome in Korean older adults: Prevalence, determinants, and nursing implications
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    Geriatric Nursing.2026; 70: 103989.     CrossRef
  • Sex differences in the association between hazardous alcohol consumption and suicide mortality: A population-based cohort study in South Korea
    Seong-Uk Baek, Jin-Ha Yoon
    Journal of Affective Disorders.2026; 411: 122031.     CrossRef
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    Clinical and Experimental Medicine.2026;[Epub]     CrossRef
  • Association of Comorbidity Duration with the Occurrence and Prognosis of Steatotic Liver Disease
    Hyunji Sang, Jihye Lim, Ha Il Kim
    Digestive Diseases and Sciences.2025; 70(1): 386.     CrossRef
  • Association between physical activity and mortality across levels of psychological stress and distress among Korean adults
    Suyeon Kim, Younghwan Choi, Yeon Soo Kim
    Mental Health and Physical Activity.2025; 28: 100662.     CrossRef
  • Metabolic outcomes in non-alcoholic and alcoholic steatotic liver disease among Korean and American adults
    Yeongmin Kim, Tae Sic Lee, Chang-Myung Oh
    BMC Gastroenterology.2025;[Epub]     CrossRef
  • Preventable Cancers Caused by Infection in Korea From 2015 to 2030
    Sungji Moon, Jeoungbin Choi, Soseul Sung, Youjin Hong, Kwang-Pil Ko, Jung Eun Lee, Inah Kim, Seungho Ryu, Sun Ha Jee, Guen Hui Kim, Sun Young Yang, Aesun Shin, Sun-Seog Kweon, Jeongseon Kim, Jieun Jang, Sangjun Lee, Kyungsik Kim, Woojin Lim, Yoon-Jung Cho
    Journal of Korean Medical Science.2025;[Epub]     CrossRef
  • Socioeconomic Inequalities in Intention to Quit Smoking Plan Among Korean Adults, 2016–2021
    Sunhee Park, Jeoung A Kwon, Byungmi Kim, Naeun Kim, Yejin Ha, Mark Parascandola, YoonJoo Choi
    Tobacco Use Insights.2025;[Epub]     CrossRef
  • Life’s Essential 8 and All-Cause and Cardiovascular Disease Mortality Among Korean Adults
    Yunmin Han, Soomin Lee, Suyeon Kim, Younghwan Choi, Yeon Soo Kim
    Circulation Journal.2025; 89(8): 1238.     CrossRef
  • Socioeconomic gradients and inequalities in all-cause mortality and cardiovascular diseases: A retrospective cohort study using Korean NHANES-mortality linkage data
    Chaiho Jeong, Kyu-Na Lee, Jin-Hyung Jung, Tae-Seo Sohn, Hyuk-Sang Kwon, Kyungdo Han, Seung-Hwan Lee
    Public Health.2025; 244: 105767.     CrossRef
  • Data Resource Profile: The Statistics of the Korea National Health and Nutrition Examination Survey (KNHANES) Biobank Project
    Hye Ah Lee, Hye Ryun Kim, Hyunjin Park, So-Young Jung, Jae-Pil Jeon, Bomi Park, Keum Ji Jung, Sun Ha Jee, Sung-Mi Shim, Hyesook Park
    Journal of Korean Medical Science.2025;[Epub]     CrossRef
  • Impact of comorbidities on health-related quality of life in diabetic patients: Evidence from a South Korean population-based panel study
    Djoko Priyono, Sanghee Kim
    Science Progress.2025;[Epub]     CrossRef
  • Dietary Intakes of Soy and Isoflavones and Risk of Mortality in a Population with High Soy Consumption
    Sihan Song, Shinyoung Jun, Hyojee Joung, Jung Eun Lee
    The Journal of Nutrition.2025; 155(10): 3517.     CrossRef
  • Preventable cancer cases and deaths attributable to tobacco smoking in Korea from 2015 to 2030
    Soseul Sung, Jihye An, Jeehi Jung, Hyeon Sook Lee, Sungji Moon, Inah Kim, Jung Eun Lee, Aesun Shin, Sun Ha Jee, Sun-Seog Kweon, Min-Ho Shin, Sangmin Park, Seungho Ryu, Sun Young Yang, Seung Ho Choi, Jeongseon Kim, Sang-Wook Yi, Yoon-Jung Choi, Youjin Hong
    Epidemiology and Health.2025; 47: e2025008.     CrossRef
  • Preventable cancer cases and deaths attributable to deficit of physical activity in Korea from 2015 to 2030
    Soseul Sung, Sungji Moon, Jihye An, Jeehi Jung, Hyeon Sook Lee, Youjin Hong, Sangjun Lee, Woojin Lim, Kyungsik Kim, Inah Kim, Jung Eun Lee, Sun Ha Jee, Aesun Shin, Ji-Yeob Choi, Sun-Seog Kweon, Min-Ho Shin, Sangmin Park, Seungho Ryu, Sun Young Yang, Seung
    Epidemiology and Health.2025; 47: e2025010.     CrossRef
  • Medication-Related Osteonecrosis of the Jaw: An Evidence-Based 2025 Position Statement from a Korean Multidisciplinary Task Force
    Jin-Woo Kim, Sung-Hye Kong, Jae-Young Kim, Mi Kyung Kwak, Jun-Young Kim, Ji-Hyeon Oh, Hyung-Youl Park, BeomTaek Kim, Young-Kyun Lee, Jeong Joon Han, Moon-Young Kim, Yong Jun Choi, Yong-Dae Kwon, Kwang-Sup Song, Beom-Jun Kim, Sun-Jong Kim, Seung-Hoon Baek,
    Endocrinology and Metabolism.2025; 40(6): 787.     CrossRef
  • Iodine Intake and Risk of Mortality: Evidence from a Nationally Representative Korean Cohort
    Jung-Hwan Cho, Jun Young Kim, Nak Gyeong Ko, Hanaro Park, Byung Soo Kwan, Ji Min Han, Sunghwan Suh, Ji Cheol Bae, Tae Hyuk Kim, Sun Wook Kim, Jae Hoon Chung, Hye Rang Bak, Hye In Kim
    Nutrients.2025; 17(24): 3859.     CrossRef
  • Fraction of cancer incidence and mortality attributable to dietary factors in Korea from 2015 to 2030
    Hyun Jeong Cho, Jin Young Yoo, Ga-Eun Yie, An Na Kim, Soseul Sung, Sungji Moon, Youjin Hong, Sangjun Lee, Inah Kim, Kwang-Pil Ko, Sun-Seog Kweon, Jung Eun Lee, Sue K. Park
    Epidemiology and Health.2025; 47: e2025065.     CrossRef
  • Chronic Disease Patterns and Their Relationship With Health-Related Quality of Life in South Korean Older Adults With the 2021 Korean National Health and Nutrition Examination Survey: Latent Class Analysis
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    JMIR Public Health and Surveillance.2024; 10: e49433.     CrossRef
  • Toloese Generates Nitric Oxide through Natural Radiation of Far Infrared Rays, Reducing Serum Glucose, Cholesterol, and Triglycerides
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    Healthcare.2024; 12(12): 1227.     CrossRef
  • Risk of all-cause mortality is associated with multiple health-related lifestyle behaviors and does not differ between urban and rural areas in Korea
    Seunghee Kim, Clara Yongjoo Park
    Nutrition Research and Practice.2024; 18(4): 554.     CrossRef
  • Association of resting heart rate and physical activity with cardiovascular mortality: A population-based cohort study of Korean adults
    Younghwan Choi, Geonhui Kim, Jiyeon Yoon, Yeon Soo Kim
    Journal of Sports Sciences.2024; 42(16): 1529.     CrossRef
  • Association between physical activity levels and mortality across adiposity: A longitudinal study of age‐specific Asian populations
    Yunmin Han, Younghwan Choi, Yeon Soo Kim
    Geriatrics & Gerontology International.2024; 24(11): 1156.     CrossRef
  • National trends in type 2 diabetes mellitus stratified by central adiposity using waist-to-height ratio in South Korea, 2005–2022
    Hyunjee Kim, Seoyoung Park, Jaeyu Park, Yejun Son, Soeun Kim, Yesol Yim, Hyesu Jo, Kyeongmin Lee, Yi Deun Jeong, Jiyeon Oh, Hanseul Cho, Damiano Pizzol, Jiyoung Hwang, Lee Smith, Dong Keon Yon
    Scientific Reports.2024;[Epub]     CrossRef
  • Dietary Patterns Associated with Body-Composition Phenotype in a Middle-Aged and Elderly Population: A Population-Based Cross-Sectional Study
    Jong Park, Narae Yang, Kirang Kim
    Nutrients.2024; 16(21): 3583.     CrossRef
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    Journal of the Korean Neurological Association.2024; 42(4): 361.     CrossRef
  • Socioeconomic inequalities in the prevalence, non-awareness, non-treatment, and non-control of diabetes among South Korean adults in 2021
    Seongju Kim, Dong Jun Kim, Hooyeon Lee, Dong Keon Yon
    PLOS ONE.2024; 19(11): e0313988.     CrossRef
  • The Relationship of Pork Meat Consumption with Nutrient Intakes, Diet Quality, and Biomarkers of Health Status in Korean Older Adults
    Ah-Jin Jung, Anshul Sharma, Mei Chung, Taylor Wallace, Hae-Jeung Lee
    Nutrients.2024; 16(23): 4188.     CrossRef
  • Computational method of the cardiovascular diseases classification based on a generalized nonlinear canonical decomposition of random sequences
    Igor Atamanyuk, Yuriy Kondratenko, Valerii Havrysh, Yuriy Volosyuk
    Scientific Reports.2023;[Epub]     CrossRef
  • The Association between Advanced Liver Fibrosis and Mortality Is Modified by Dietary Quality among Korean Adults: Results from the Korea National Health and Nutrition Examination Survey with Mortality Data
    Juhee Lee, Garam Jo, Dahyun Park, Hee Ju Jun, Jae Hyun Bae, Min-Jeong Shin
    Nutrients.2023; 15(6): 1501.     CrossRef
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    PLOS ONE.2023; 18(5): e0286346.     CrossRef
  • Fibrosis-4 Index Predicts Long-Term All-Cause, Cardiovascular and Liver-Related Mortality in the Adult Korean Population
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    Clinical Gastroenterology and Hepatology.2023; 21(13): 3322.     CrossRef
  • The serotype-specific prevalence of pneumococci in hospitalized pneumonia patients with COPD: a prospective, multi-center, cohort study
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    The Korean Journal of Internal Medicine.2023; 38(5): 714.     CrossRef
  • The Korea Cohort Consortium: The Future of Pooling Cohort Studies
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    Journal of Preventive Medicine and Public Health.2022; 55(5): 464.     CrossRef
  • Self-perceived Weight and Mortality in Korean Adults Based on the Korea National Health and Nutrition Examination Survey Data Linked to Cause of Death Statistics
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    Journal of Obesity & Metabolic Syndrome.2022; 31(4): 313.     CrossRef
Review Paper
Population data science: advancing the safe use of population data for public benefit
Kerina Helen Jones, David Vincent Ford
Epidemiol Health. 2018;40:e2018061.   Published online December 25, 2018
DOI: https://doi.org/10.4178/epih.e2018061
  • 27,154 View
  • 169 Download
  • 10 Web of Science
  • 10 Crossref
AbstractAbstract PDF
Abstract
The value of using population data to answer important questions for individual and societal benefit has never been greater. Governments and research funders world-wide are recognizing this potential and making major investments in data-intensive initiatives. However, there are challenges to overcome so that safe, socially-acceptable data sharing can be achieved. This paper outlines the field of population data science, the International Population Data Linkage Network (IPDLN), and their roles in advancing data-intensive research. We provide an overview of core concepts and major challenges for data-intensive research, with a particular focus on ethical, legal, and societal implications (ELSI). Using international case studies, we show how challenges can be addressed and lessons learned in advancing the safe, socially-acceptable use of population data for public benefit. Based on the case studies, we discuss the common ELSI principles in operation, we illustrate examples of a data scrutiny panel and a consumer panel, and we propose a set of ELSI-based recommendations to inform new and developing data-intensive initiatives.We conclude that although there are many ELSI issues to be overcome, there has never been a better time or more potential to leverage the benefits of population data for public benefit. A variety of initiatives, with different operating models, have pioneered the way in addressing many challenges. However, the work is not static, as the ELSI environment is constantly evolving, thus requiring continual mutual learning and improvement via the IPDLN and beyond.
Summary

Citations

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  • Development and validation of the youth development instrument (YDI): A comprehensive survey of adolescent health and well-being
    Hasina Samji, Jorge A. Delgado-Ron, Kimberly A. Schonert-Reichl, Martin Guhn, David Long, Jenna Whitehead, Lauren Gorfinkle, Giulia De Arruda Maluf, Judy Wu, Julia Kaufmann, Jose M. del Casal, Jacqueline Maloney
    Children and Youth Services Review.2025; 179: 108557.     CrossRef
  • ‘What about the dads?’ Linking fathers and children in administrative data: A systematic scoping review
    Irina Lut, Katie Harron, Pia Hardelid, Margaret O’Brien, Jenny Woodman
    Big Data & Society.2022;[Epub]     CrossRef
  • The Social Data Foundation model: Facilitating health and social care transformation throughdatatrust services
    Michael Boniface, Laura Carmichael, Wendy Hall, Brian Pickering, Sophie Stalla-Bourdillon, Steve Taylor
    Data & Policy.2022;[Epub]     CrossRef
  • Fostering trustworthy data sharing: Establishing data foundations in practice
    Sophie Stalla-Bourdillon, Laura Carmichael, Alexsis Wintour
    Data & Policy.2021;[Epub]     CrossRef
  • Interdisciplinary data science to advance environmental health research and improve birth outcomes
    Jeanette A. Stingone, Sofia Triantafillou, Alexandra Larsen, Jay P. Kitt, Gary M. Shaw, Judit Marsillach
    Environmental Research.2021; 197: 111019.     CrossRef
  • Considerations for an integrated population health databank in Africa: lessons from global best practices
    Jude O. Igumbor, Edna N. Bosire, Marta Vicente-Crespo, Ehimario U. Igumbor, Uthman A. Olalekan, Tobias F. Chirwa, Sam M. Kinyanjui, Catherine Kyobutungi, Sharon Fonn
    Wellcome Open Research.2021; 6: 214.     CrossRef
  • The road to hell is paved with good intentions: the experience of applying for national data for linkage and suggestions for improvement
    Julie A Taylor, Sonya Crowe, Ferran Espuny Pujol, Rodney C Franklin, Richard G Feltbower, Lee J Norman, James Doidge, Doug William Gould, Christina Pagel
    BMJ Open.2021; 11(8): e047575.     CrossRef
  • Panel 4: Recent advances in understanding the natural history of the otitis media microbiome and its response to environmental pressures
    Robyn L. Marsh, Celestine Aho, Jemima Beissbarth, Seweryn Bialasiewicz, Michael Binks, Anders Cervin, Lea-Ann S. Kirkham, Katherine P. Lemon, Mary P.E. Slack, Heidi C. Smith-Vaughan
    International Journal of Pediatric Otorhinolaryngology.2020; 130: 109836.     CrossRef
  • Age-Dependent and Seasonal Changes in Menstrual Cycle Length and Body Temperature Based on Big Data
    Takayuki Tatsumi, Makiko Sampei, Kazuki Saito, Yuka Honda, Yuka Okazaki, Naoko Arata, Kanako Narumi, Naho Morisaki, Tomonori Ishikawa, Satoshi Narumi
    Obstetrics & Gynecology.2020; 136(4): 666.     CrossRef
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Review
Registry-based stroke research in Taiwan: past and future
Cheng-Yang Hsieh, Darren Philbert Wu, Sheng-Feng Sung
Epidemiol Health. 2018;40:e2018004.   Published online February 4, 2018
DOI: https://doi.org/10.4178/epih.e2018004
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  • 23 Web of Science
  • 20 Crossref
AbstractAbstract PDF
Abstract
Stroke registries are observational databases focusing on the clinical information and outcomes of stroke patients. They play an important role in the cycle of quality improvement. Registry data are collected from real-world experiences of stroke care and are suitable for measuring quality of care. By exposing inadequacies in performance measures of stroke care, research from stroke registries has changed how we manage stroke patients in Taiwan. With the success of various quality improvement campaigns, mortality from stroke and recurrence of stroke have decreased in the past decade. After the implementation of a nationwide stroke registry, researchers have been creatively expanding how they use and collect registry data for research. Through the use of the nationwide stroke registry as a common data model, researchers from many hospitals have built their own stroke registries with extended data elements to meet the needs of research. In collaboration with information technology professionals, stroke registry systems have changed from web-based, manual submission systems to automated fill-in systems in some hospitals. Furthermore, record linkage between stroke registries and administrative claims databases or other existing databases has widened the utility of registry data in research. Using stroke registry data as the reference standard, researchers have validated several algorithms for ascertaining the diagnosis of stroke and its risk factors from claims data, and have also developed a claims-based index to estimate stroke severity. By making better use of registry data, we believe that we will provide better care to patients with stroke.
Summary

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    Stroke: Vascular and Interventional Neurology.2023;[Epub]     CrossRef
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    Frontiers in Neurology.2022;[Epub]     CrossRef
  • Clinical registries data quality attributes to support registry-based randomised controlled trials: A scoping review
    Khic-Houy Prang, Bill Karanatsios, Ebony Verbunt, Hui-Li Wong, Justin Yeung, Margaret Kelaher, Peter Gibbs
    Contemporary Clinical Trials.2022; 119: 106843.     CrossRef
  • Hypoperfusion Index Ratio as a Surrogate of Collateral Scoring on CT Angiogram in Large Vessel Stroke
    Chun-Min Wang, Yu-Ming Chang, Pi-Shan Sung, Chih-Hung Chen
    Journal of Clinical Medicine.2021; 10(6): 1296.     CrossRef
  • The Riga East University Hospital Stroke Registry—An Analysis of 4915 Consecutive Patients with Acute Stroke
    Guntis Karelis, Madara Micule, Evija Klavina, Iveta Haritoncenko, Ilga Kikule, Biruta Tilgale, Inese Polaka
    Medicina.2021; 57(6): 632.     CrossRef
  • 10th Anniversary of the Asia Pacific Stroke Organization: State of Stroke Care and Stroke Research in the Asia-Pacific
    Kay-Sin Tan, Byung-Woo Yoon, Ruey-Tay Lin, Man Mohan Mehndiratta, Nijasri C. Suwanwela, Narayanaswamy Venketasubramanian
    Cerebrovascular Diseases Extra.2021; 12(1): 14.     CrossRef
  • Smoking Paradox in Stroke Survivors?
    Hao-Kuang Wang, Chih-Yuan Huang, Yuan-Ting Sun, Jie-Yuan Li, Chih-Hung Chen, Yu Sun, Chung-Hsiang Liu, Ching-Huang Lin, Wei-Lun Chang, Jiunn-Tay Lee, Sheng-Feng Sung, Po-Yen Yeh, Ta-Chang Lai, I-Ju Tsai, Mei-Chen Lin, Cheng-Li Lin, Chi-Pang Wen, Chung Y.
    Stroke.2020; 51(4): 1248.     CrossRef
  • Two Decades of Research Using Taiwan’s National Health Insurance Claims Data: Bibliometric and Text Mining Analysis on PubMed
    Sheng-Feng Sung, Cheng-Yang Hsieh, Ya-Han Hu
    Journal of Medical Internet Research.2020; 22(6): e18457.     CrossRef
  • Home-Time as a Surrogate Measure for Functional Outcome After Stroke: A Validation Study


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    Clinical Epidemiology.2020; Volume 12: 617.     CrossRef
  • THE ROLE OF THE HOSPITAL REGISTRY TO ASSESS THE QUALITY OF STROKE DIAGNOSIS
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    World of Medicine and Biology.2020; 16(74): 103.     CrossRef
  • Apolipoprotein B Level and the Apolipoprotein B/Apolipoprotein A-I Ratio as a Harbinger of Ischemic Stroke: A Prospective Observation in Taiwan
    Yu-Ching Chou, Po-Chi Chan, Tsan Yang, San-Lin You, Chyi-Huey Bai, Chien-An Sun
    Cerebrovascular Diseases.2020; 49(5): 487.     CrossRef
  • Promising Use of Big Data to Increase the Efficiency and Comprehensiveness of Stroke Outcomes Research
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    Stroke.2019; 50(5): 1302.     CrossRef
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Original Articles
Is the Tuberculosis Case Reporting Rate of Medical Care Institutions in Private Sector low?
Jong Seon Han, Won Gi Jhang, Young Hwangbo, Sung Soo Lee, Moran Ki
Korean J Epidemiol. 2008;30(2):230-238.   Published online December 31, 2008
DOI: https://doi.org/10.4178/kje.2008.30.2.230
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AbstractAbstract PDF
Abstract
PURPOSE
To estimate the reporting rate of tuberculosis in one medium-sized city in Korea.
METHODS
Data claimed by national health insurance corporationand notification data of KTBS (Korea Tuberculosis Surveillance System) were compared through medical record-linkage method. Regarding the cases that were claimed medical care fee as tuberculosis but not notified to KTBS, we reviewed medical charts of the patients and investigated the reasons of failure to notify.
RESULTS
Number of cases claimed health insurance fee as tuberculosis occurrences in Cheonan was 2,331 in 2007, while 956 cases were matched as notified cases to KTBS after electronic record-linkage by personal identifier. Among remaining 1,375 cases that were not matched, real missed cases through medical record review survey were found to be 104. The reasons of failure to notify were because of 'not tuberculosis patients' (500, 36.4%), 'notified in 2006' (421, 30.6%), 'diseases coding error' (341, 24.8%) and 'notified as other diseases' (9, 0.7%). Therefore, the corrected reporting rate was calculated at 93% (95% CI: 91.6% - 94.2%). Notably, reporting rate of clinics (58.1%) was significantly lower than those of hospitals (93.4%) or general hospitals (96.6%).
CONCLUSIONS
All cases of tuberculosis diagnosis, which were claimed and not notified, were verified, the reporting rate was not as low as that of the data known through media. However, to reach the goal of tuberculosis elimination (reporting rate over 95%), more effort into improvement of the reporting system is necessary.
Summary
Examples and outlook of family-based cohort study.
Jae Woong Sull, Sue Kyung Park, Heechoul Ohrr, Sun Ha Jee
Korean J Epidemiol. 2008;30(1):49-59.   Published online June 30, 2008
DOI: https://doi.org/10.4178/kje.2008.30.1.49
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AbstractAbstract PDF
Abstract
Family-based designs are commonly used in genetic association studies to identify and to locate genes that underlie complex diseases. In this paper, we review two examples of genome-wide association studies using family-based cohort studies, including the Framingham Heart Study and International Multi-Center ADHD Genetics Project. We also review statistical methods of family-based designs, including the transmission disequilibrium test (TDT), linkage analysis, and imprinting effect analysis. In addition, we evaluate the strengths and limitations of the family-based cohort design. Despite the costs and difficulties in carrying out this type of study, a family-based cohort study can play avery important role in genome wide studies. First, the design will be free from biases due to population heterogeneity or stratification. Moreover, family-based designs provide the opportunity to conduct joint tests of linkage and association. Finally, family-based designs also allow access to epigenetic phenomena like imprinting. The family-based cohort design should be given careful consideration in planning new studies for genome-wide strategies.
Summary
Occupational Cancer Surveillance System Using Data Linkage Analysis in Korea.
Sang Yun Lee, Jaiyong Kim, Seongwoo Choi, Hyungjun Im, Kijung Yoon, Ho Jang Kwon, Soo Hun Cho, Daehee Kang
Korean J Epidemiol. 1999;21(2):276-282.
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AbstractAbstract PDF
Abstract
To develop the occupational cancer surveillance system in Korea, data linkage analysis was performed on the subjects of Health-monitoring-pocketbook (the list of subjects who were exposed to selected occupational carcinogens) and the retired workers of a cokes manufacturing factory using the Korean medical insurance data, Korean death certificate data and Korean cancer registry data. Study subjects comprised the 822 retired subjects and the 3101 present-post subjects of Health-monitoring-pocketbook and the 182 retired workers of a cokes manufacturing factory. The incidence of cancer of these study subjects was ascertained by linkage of Korean medical insurance data of year 1995-6, Korean death certificate data of year 1992-8 and Korean cancer registry data of year 1993-5. In the study subjects, Eighty seven percent were males and mean age was 39.3+/-8.9 year-old, Average work duration was 8.0+/-5.5 years. Chrome, asbestos and cokes were the most frequent exposed agents. In the study subjects, total 13 cancer cases were ascertained by data linkage analysis. In the ascertained cancer cases, 8 cases were male and 5 cases were female, and 7 cases were aged 40-49 yr, 5 cases were aged 50-59 yr and 1 cases were aged 30-39 yr. The commonest exposure agent in the ascertained cancer cases was asbestos and cokes. By the site of cancer, 3 stomach cancer cases, 2 hematopoietic cancer cases and 2 biliary tract cancer cases were ascertained. The occupational cancer surveillance system using data linkage analysis on the workers exposed to hazardous agents was the most feasible and efficient method in Korea. And to do this, establishment of occupational history information in several disease registry database is needed with the effort of estimating the proper size of workers exposed hazardous agents.
Summary

Epidemiol Health : Epidemiology and Health
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