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We are approaching the end of 2023, a year full of events thanks to the dedicated efforts of the staff and principal investigators of NEAR, as well as the entire NEAR user community. Approximately one month ago, we also had the opportunity to gather in person during the annual NEAR workshop. We spent an intensive day surrounded by the warm hospitality of the Fondazione Ferrero in Alba, Italy. Not only was I enthusiastic about the high scientific level and stimulating content, but also about the positive messages conveyed by all the speakers, which resonated with me as a senior professor.
On a personal note, I was glad to realize that I am now only 50 years old. In addition, I got specific recommendations to prolong my middle-age phase even further, as I can: 1) Monitor my health using the Health Assessment Tool (HAT); 2) Use positive attitudes and curiosity to maintain a young brain; 3) Go to bed early to improve sleep quality; and 4) Intensify my support for our planet to protect our living environment.
As a scientist, I was deeply moved by the great efforts to identify: 1) The genetic background of longevity (please do not give up on the elusive genes, my parents both lived until over 90, and I am full of hope!); 2) Sustainable strategies for future generations of older adults (we all share the same goal: compressing late-life morbidity!);
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Laura Fratiglioni, Director, NEAR. Photo: Maria Yohuang
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3) New statistical methods to address study design limitations (I promise that we will still work to decrease data missingness); and 4) Risks that are relevant at both the individual and societal levels.
Finally, the inspiring panel discussion showed something we perhaps already know but tend to forget: Clinicians need scientific evidence to enhance their daily practices, and researchers benefit from the experiences of clinicians and other professionals to shape new and more refined research agendas.
We extend our heartfelt thanks to all participants in the NEAR workshop and wish you all the best for the coming year!
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On November 8, NEAR organized its fifth workshop in collaboration with the Ferrero Foundation during Healthy Aging Week 2023 in Alba, Italy. This year’s workshop focused on new opportunities for aging research in Europe.
Following a warm welcome from Maria Eriksdotter and Laura Fratiglioni, the workshop featured various presentations from senior researchers. The afternoon session delved into concrete examples of using NEAR data. Three different projects were presented focusing on sleep and cognition, the challenges of systematic missing data in prospective studies, and health-related factors concerning lifetime cardiovascular risk.
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Ingmar Skoog, Linus Jönsson, Tom Bellander and Lars Nyberg. Photo: Maria Yohuang
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The day ended with a panel discussion among Alessandra Marengoni, Andrea Ungar, Maria Eriksdotter, Ingmar Skoog, Anne Ekdahl, and Wilhelmina Hoffman. Among the key takeaways was unanimous agreement on the necessity for high-quality big data to boost sample sizes and power, particularly for rare diseases. Additionally, they stressed the critical role of big data from diverse study samples and geographical areas in enhancing results' generalizability. NEAR’s current building and development were highlighted as key contributors to the future value of aging research. Plans for continued education on collecting, handling, and storing epidemiological big data were discussed, underscoring the importance of staying abreast of different methodologies and statistical models when using high-quality big data. Looking ahead, NEAR emphasized its commitment to spreading and translating research results into practice through networks and contacts with policymakers. The reciprocal relationship between medicine and research was emphasized, highlighting the need for a clinical perspective to enhance the effectiveness and relevance of research in advancing healthcare practices.
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Panel discussion members. Photo: Maria Yohuang
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Symposium at EU-GMS in Helsinki
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From September 20-22, NEAR attended and held a symposium at the European Geriatric Medicine Society (EU-GMS) 2023 in Helsinki, Finland. EU-GMS’s mission is to develop geriatric medicine in Europe as an independent specialty caring for older people with age-related diseases. The event served as a crucial platform for the exchange of research findings aimed at improving health and care services for the older population.
The well-attended NEAR symposium entitled: “High-Quality Big Data for Geriatric Research: Experiences from the Swedish National E-infrastructure for Aging Research (NEAR)”, showcased infrastructure insights and ongoing project results. NEAR’s Scientific Coordinator, Debora Rizzuto, and Scientific Promoter, Davide Liborio Vetrano, jointly chaired the session.
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Scott Hofer, Davide Vetrano and Debora Rizzuto. Photo: Linnea Sjöberg
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Scott Hofer from the Pacific Health Research and Education Institute in Honolulu, presented the importance of high-quality big data from longitudinal population studies in addressing clinical outcomes. This was followed by two presentations on ongoing NEAR projects. One presentation focused on longitudinal profiles of functional limitations concerning impending death and was presented by Linda Enroth, Tampere University. The other presentation addressed the prognostic value of the health assessment tool (HAT): external validation based on the Swedish National Study on Aging and Care in NEAR, and was given by Amaia Calderón Larrañaga, Karolinska Institutet. The symposium's success was evident not only in the depth of the presentations but also in the engaging discussion that followed. Participants posed numerous questions and provided positive feedback. We look forward to building on this momentum and further advancing our understanding of longitudinal population studies and their impact on clinical outcomes.
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Linda Enroth and Amaia Calderón-Larrañaga. Photo: Linnea Sjöberg
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Symposium at SWEAH conference
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On November 21, NEAR hosted a symposium at the Swedish Graduate School on Ageing and Health (SWEAH) conference in Norrköping. SWEAH is a multidisciplinary research school on aging and health, which Lund University coordinates. The conference theme, “Interdisciplinary Perspectives on Sustainable Ageing”, brought together researchers at all levels from SWEAH’s 13 partner universities.
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Photo of the presenters and chair. Photo: Mariam Kirvalidze
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Shireen Sindi. Photo: Mariam Kirvalidze
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This talk was followed by Amaia Calderón Larrañaga who presented results from the project: “Prognostic value of the Health Assessment Tool (HAT): An external validation based on the Swedish National Study on Aging and Care in NEAR“. Overall, the HAT’s external validity was acceptable in the two external populations.
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NEAR's Scientific Coordinator, Debora Rizzuto, provided an overview of NEAR, emphasizing the importance and need for high-quality big data in longitudinal epidemiology. She also discussed how NEAR operates and the process of applying for NEAR data. Shireen Sindi presented results from the recently accepted NEAR study: “Sleep disturbances and cognition among older adults: A multicentre study of five Nordic cohorts“. In brief, various sleep disturbances, e.g., long sleep duration and excessive daytime napping (>2 hours) were associated with impaired cognitive abilities such as episodic memory, verbal fluency, perceptual speed, and executive functioning.
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Debora Rizzuto. Photo: Mariam Kirvalidze
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Amaia Calderón Larrañaga. Photo: Mariam Kirvalidze
The symposium resulted in meaningful interactions, creating valuable connections with prospective NEAR users throughout the SWEAH conference. This convergence of ideas and networking opportunities underscores the significance of collaborative efforts in advancing the understanding and utilization of NEAR data within the academic and research community.
Read more about the symposium here
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New NEAR results: Systematically missing data on gait speed
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Healthcare decisions should be based on high-quality evidence. Data pooling, i.e., combining individual data from different studies to perform a single analysis, sometimes called individual participant data meta-analyses (IPDMA), can help achieve this goal. Apart from ensuring that the same statistical model and conditions are used across all studies, IPDMA is often used to increase statistical power to detect more granular effects that a single study cannot find. However, practical challenges such as systematically missing data can arise. A variable is systematically missing when it is not measured in one or more of the included studies. In such circumstances, researchers must weigh the trade-offs between excluding data, thus losing power, or applying methods, such as multiple imputations, to infer missing values from observed data.
A NEAR-based study explored three different methods for multiple imputations on systematically missing data on gait speed in relation to 5-year mortality in four population-based studies on older adults aged 59─≥90 years.
"Gait speed was systematically missing from one study. Therefore, we used information from the other three studies with complete data on gait speed to perform three different multiple imputation strategies: fully conditional specification (FCS); multivariate normal (MVN); and conditional quantile imputation (CQI)", says the study's first author Robert Thiesmeier.
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Title of the research project:
Multiple imputation of systematically missing data on gait speed in the Swedish National Study on Aging and Care.
Databases included:
1) The Swedish National study on Aging and Care – Skåne (SNAC-S), 2) Kungsholmen (SNAC-K), 3) Blekinge (SNAC-B), and 4) Nordanstig (SNAC-N).
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Robert Thiesmeier, PhD student and first author of the study. Photo: Stephanie Pitt
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The study found that all three different methods of multiple imputation performed relatively well in imputing missing data on gait speed and its effect on 5-year mortality. This was in the study that completely missed gait speed data.
"Our results showed that multiple imputations can be successfully used when applied with caution and an appropriate statistical model to impute the missing data. We found the highest performance for conditional quantile multiple imputation (CQI). We hope these results can be further evaluated and replicated in different contexts. We believe that developing appropriate methods of handling systematically missing data is crucial for large pooling projects, such as NEAR. Results from these studies can help infer evidence-based healthcare", says Thiesmeier.
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Robert's experience working with NEAR data:
When using NEAR data, if you face methodological and practical challenges, such as missing data, it can be extremely helpful to learn from other NEAR studies with similar data. This way you can maximize the potential of NEAR data richness.
Read more about other NEAR results
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Jonas Molinder is currently using NEAR data to explore the association between personality traits and biomarkers of cognitive disorders.
Hello Jonas, how is your project coming along?
It is moving along great. I’m currently in a phase where I’m trying to interpret and make sense of my results. Doing that, I find it helpful to organize numbers in tables and visualize them using various graphs. This makes getting a comprehensive overview of what I have found easier. Naturally, I am also scanning the recent literature for comparative studies, to benchmark my results and put them into context.
Why are you using NEAR data?
We made observations in data from the Gothenburg H70 study that we found interesting. However, because of a limited pool of participants, we thought it would be beneficial to replicate our findings using data from another similar study (SNAC-K). Thanks to NEAR, we can now compare our results, and with even better statistical power.
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Title of the research project:
Exploring the associations between personality traits and biomarkers of cognitive disorders in population-based studies of older adults
Databases included:
1) The Gothenburg H70 Birth Cohort Studies (H70) and 2) Swedish National study on Aging and Care - Kungsholmen (SNAC-K)
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Jonas Molinder, PhD student, licensed psychologist, and first author of the project. Photo: Private
What are the advantages and disadvantages of using NEAR data?
Neither I nor my supervisor had previous experience using the NEAR service. We initially anticipated a delay in my project. However, at the end of the day, we were positively surprised by the pace at which we received our data. Plus, NEAR also responded swiftly and helped whenever we had questions. Thus far, I cannot really pinpoint any disadvantages to using NEAR!
Best life hack:
At the moment, my best life motto is “The truth shall set you free”. It captures an important personal value that I try to live by. Actively seeking out the truth, what you believe to be true, as well as acting truthfully and honestly, will make your road bumpy at times. However, you will at least live with your eyes wide open. You will probably also gain respect, not least from yourself!
See all ongoing projects in NEAR
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Infrastructure collaboration
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Ethical seminar on data usage in research infrastructures
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On October 12th, NEAR and the Comparative Research Center Sweden (CORS) held a seminar entitled “Ethical Perspectives on Data Usage in Research Infrastructures”. The seminar aimed to understand the ethical aspects of using secondary data in research infrastructures. During the afternoon, around 100 participants attended, on-site or online, to listen to the seminar, which involved presentations from authority, research, infrastructure, juridical, and philosophical perspectives.
Following the presentations, the speakers participated in a panel discussion for which they were joined by Lina Nordquist, Spokesperson for Health Care Policy, Liberalerna (L) and Associate Professor, Uppsala University (UU), as well as Mats Gustavsson, Data Protection Officer and Lawyer, Karolinska Institutet (KI). Among other things, a discussion on the need for legislation for infrastructures, not specific research projects took place. Overall, everyone agreed on the need for continued discussions and dialogue between all sectors on improving and developing ethical legislation on data usage in national infrastructures.
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Björn Halleröd (moderator), Torbjörn Tännsjö, Johan Modin, Lena Wahlberg, Lina Nordquist, Hugo Westerlund, Mats Gustavsson, and Henrik Ekengren Oscarsson. Photo: Maria Yohuang
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Exploring individual-based research databases: A seminar on infrastructures
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On November 27th, the School of Economics and Management (LUSEM) and the Faculty of Social Science at Lund University arranged a seminar where Laura Fratiglioni presented NEAR. Maria Stanfors moderated the day where three other national research infrastructures were also presented including REWHARD, SWEDPOP, and CORS*. Participants learned about the content of these infrastructures and how to access them, gaining insights into aging and health data, work and living conditions, historical population databases, and large-scale surveys.
The infrastructure presentations were followed by a panel discussion on the topic: "Research databases with personal data - current status and future". The panelists included representatives from research, law, medicine, social sciences, and research funders. Overall, the need for clearer guidelines on the long-term regulation of individual research databases and infrastructures, as well as assistance and specialized competence within data legal issues was discussed. For Sweden to continue to strive and pioneer individual-based research globally, these issues should be addressed.
Read more about the seminar and panel discussion.
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* RElations, Work and Health across the life-course - A Research Data Infrastructure (REWHARD); Swedish population databases for research (SWEDPOP); Comparative Research Center Sweden (CORS).
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12-14 June - Symposiums at the Nordic Congress of Gerontology (NKG) in Stockholm. Among others, the 27th Congress is arranged by Karolinska Institutet. Submit your abstract here (deadline 25 January 2024).
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NEAR was founded in 2018 and promotes and supports aging research by facilitating the use of longitudinal cohort data from several well-known Swedish studies on aging and health. It is based on a collaboration among eight Swedish universities, includes 15 databases with individual assessments, and cooperates with other national research infrastructures. NEAR provides a broad range of health and social data from around 90,000 older adults followed for 12 to 52 years.
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