Read about the possibilities of our Fingenious Ecosystem and accelerate your RWE or RWD research.
Ecosystem
The failure rate of phase II and III clinical trials in neuroscience is approximately 85%, underscoring the importance of up-to-date epidemiological data for improved drug design and patient stratification for clinical trials. DEGE-RWD project, led by Associate Professor Eino Solje (University of Eastern Finland) explores health conditions, treatment patterns, and socioeconomic trajectories that precede and predict neurodegenerative diseases. This project, coordinated by Neurocenter Finland is not only one of the largest clinically validated real-world data studies leveraging Finnish health registries, but also a pioneering example of a new collaboration model between academia and industry.
A large-scale Nordic study led by the NORDSTAR research collaboration, and co-authored by Fingenious Ecosystem Partner Quantify Research, has used national health registry data from Finland, Sweden, and Norway to examine how patients with severe asthma are managed in practice. Insights from almost 600,000 asthma patients across the three countries, the study offers new insights into the prevalence of severe asthma and how care is delivered—particularly in Finland.
Events
On 4th of September 2025, nearly 500 professionals from around the world participated in an interactive event to explore the future of the Finnish health data ecosystem, current opportunities in research collaboration and the potential to accelerate R&D between the public and private sectors. Organised in collaboration between FinnGen, Sitra, FINBB, and the Ministry of Social Affairs and Health, this event brought together key actors in the Finnish health data ecosystem and representatives from pharmaceutical and biotech companies to discuss how Finland’s health data infrastructure can best serve the evolving research, innovation and product development needs.
AI-powered predictive models enable the analysis of treatment effects and the identification of individual care needs. In a short time, artificial intelligence has revolutionized the research and use of health data. At the same time, it is reshaping patient care, as machine learning models can detect hidden patterns and predict disease risks more accurately than ever before. Explore the diverse use of AI in Medaffcon's projects in Finland and other Nordic countries.
News
HealthHub Finland (HHFIN) promotes the development of digital solutions for health and well-being and serves as a gateway to Finnish health data. Finnish Biobank Cooperative FINBB is a partner in HealthHub Finland EDIH – European Digital Innovation Hub. The role of FINBB in the HealthHub Finland EDIH is to provide a one-stop window to the samples and biodata of Finnish public biobanks through the Fingenious® service, enabling research and development based on real healthcare data, and by digitally recontacting sample donors for further studies.
OutSee, a Cambridge start-up that develops and applies innovative computational approaches to genomics for drug target discovery and precision medicine, and Finnish Biobank Cooperative – FINBB are pleased to continue their collaboration to advance biomedical research in dementia.
OutSee, a Cambridge start-up that develops and applies innovative computational approaches to genomics for drug target discovery and precision medicine, and Finnish Biobank Cooperative – FINBB are pleased to announce their collaboration to advance biomedical research in dementia.
Obesity is an increasing public health challenge in Finland, impacting quality of life, healthcare costs, and societal well-being. The FinWeight study combines health examination data and national register information to provide a comprehensive view of the situation. The findings highlight significant personal and economic burdens, emphasizing the urgent need for effective prevention strategies and timely interventions to reduce obesity-related comorbidities and costs to individuals and society.
Clinical trial success requires efficient and targeted patient recruitment. Finnish Biobank Cooperative – FINBB has developed a national patient recontacting service in Fingenious® digital portal. The Fingenious® recontacting service enables patient recruitment into clinical trials and benefits various stakeholders. The value generated by the Fingenious® recontacting service was assessed in a joint study by ESiOR Oy and FINBB.
For rare conditions there is often a lack of knowledge about the actual epidemiology and/or descriptive characteristics of the patient population. PharmaLex – a part of Cencora, supports healthcare, industry and academia with Real World Evidence studies. One example is a retrospective study describing the epidemiology, population characteristics and management of patients diagnosed with Myasthenia gravis over the course of 10 years.
Atrial fibrillation (AF) is a common cardiac arrhythmia that significantly increases the risk of ischemic stroke and systemic embolism. Quantify Research conducted a pan-Nordic real-world evidence study to evaluate the effectiveness and safety of direct-acting oral anticoagulants (DOACs) compared to standard warfarin in routine clinical care. The Finnish sub-study leveraged data from prescription, patient, and cause-of-death registers, analyzing over 40,000 Finnish patients with AF across an 8-year period.
Utilizing multimodal health data has gained significant interest in the healthcare due to its potential to enhance diagnostics and treatment, and to improve patient outcomes. In stroke diagnosis, the integration of multimodal patient data has proven to be invaluable, as exemplified by the Stroke-DATA project, where VTT analyzed video recordings, accelerometer data, retinal fundus images and tabular data. Integration of diverse data sources represents a transformative approach to healthcare, offering a comprehensive view of patient health.
Findata, the Finnish Social and Health Data Permit Authority, is strengthening the service infrastructure for the secondary use of health data, paving the way for Finland’s participation in the European Health Data Space (EHDS) infrastructure. After five years of operation, Findata received funding from the European Union to further develop national services and to prepare for the EHDS. This effort is FinHITS – Strengthening Finnish Health Data IT for Secondary use, a four-year project aiming to refine Finland’s service infrastructure for health data utilization to better align with user needs and meet upcoming EHDS requirements. Learn more about FinHITS and its key focus areas.
Sharing clinical data across borders is vital for biomedical research, but privacy regulations and traditional anonymization methods create barriers. VEIL.AI’s next-generation technology overcomes these challenges, enabling secure, high-quality, GDPR-compliant data sharing. This breakthrough allows pharmaceutical companies to maximize data utility, enhance clinical trials, and support international research, as showcased in Bayer’s Future Clinical Trials project.
A recent study conducted by ESiOR in the SPESiOR® secure processing environment, in collaboration with Novartis and the wellbeing services county of Siun sote, has provided valuable insights into the link between cardiovascular risk factors and healthcare costs. Classifying patients based on their risk of recurrent cardiovascular events could allow healthcare providers to implement more tailored treatment plans, leading to improved patient outcomes and potentially substantial cost savings. This collaboration underscores the vital role of data-driven analysis in advancing personalized and efficient healthcare solutions.
Discover Oriola RWE team’s latest scientific project on disease burden and healthcare resource use of pneumonia in Finland. This nationwide project is based on unique real-world data from Finnish health registries. The Nordic countries provide ideal conditions for registry studies, thanks to harmonised laws, electronic data collection, and nationwide cohort creation.
Finland offers a unique and advantageous environment for conducting real-world evidence (RWE) studies. Data retrieved from the Finnish health and social care registries may be more representative compared to other countries. Therefore, Finland is a strong option when weighing in which country the research would be carried out in. This article by Medaffcon presents a multiregistry study combining health and social data.
Fingenious® Ecosystem Partner, FVR – Finnish Vaccine Research Ltd., a special-assignment company of the Finnish state, conducts commercial vaccine studies in phases 1-4 with decades of experience and internationally recognized, high-quality scientific expertise. In addition to clinical vaccine trials, FVR has extensive experience in conducting phase 4 observational vaccine studies (RWE) and pragmatic clinical trials for evaluating vaccine effectiveness, safety, and disease burden. Explore FVR examples of post-licensure studies.
Use cases
In collaboration with FINBB, Adaptive Biotechnologies has been working with biobanks across Finland. The focus was on studying large number of blood samples to discover and validate TCR signatures specific to various autoimmune diseases. Working with FINBB through Fingenious® has allowed Adaptive to identify useful cohorts of patient samples. The Finnish homogenous population provides a unique opportunity to find different signals related to autoimmune diseases. Now the returned data for large-scale sequencing of T- and B-cell receptors is a valuable dataset for many researchers. It can be requested from Fingenious® for other studies.
Finnish Biobanks – FINBB and Phenome Health, a US non-profit organization, have signed a strategic collaboration agreement and jointly agreed to collaborate to advance medical research in Finland.
At the University of Eastern Finland (UEF), as part of an ongoing UEF Brain Research Unit 2.0 ERDF project (UEF BRU 2.0) an operating model is created and tested to identify people with underlying functional genetic variant associated with brain diseases, including frontotemporal lobar degeneration (FTLD) and Alzheimer’s disease (AD). The operating model is built in cooperation with the Biobank of Eastern Finland, UEF Genome Center, UEF Brain Research Unit, and the research groups of UEF.
Owkin, the first end-to-end AI-BioTech unicorn startup that provides best-in-class AI-driven precision drug discovery, development, and diagnostics, and Finnish Biobank Cooperative – FINBB are pleased to announce their collaboration to advance medical research.
GENEROOS is a study that aims to determine the role of genetics in weight loss. In other words, can some people lose weight more easily than others because of their genetic background? To achieve this, ~1200 participants were recontacted to participate in the study by the Finnish Clinical Biobank Tampere (FCBT).
The GenomeHealth project, a national initiative to explore the utilization of genomic information accumulated in biobank operations in healthcare, was launched in Finland’s hospital biobanks in the fall of 2021. The aim of the project was to examine the use of single nucleotide polymorphism (SNP) array genotyping data for identification of rare genetic variants, study the significance of genetic information for the biobank sample donor, and to build a process for utilizing genomic data at the individual level.
The Finnish Biobank Act allows Finnish biobanks to contact consented sample donors and invite them to participate in studies, including surveys. To facilitate the contacting process and to enable the execution of surveys online, a digital platform called MyBiobank has been launched by Finnish Biobank Cooperative -FINBB together with Finnish biobanks, hospital districts and the FinnGen research project.
On Sept 30th, 2024, more than 400 professionals from pharma, biotech, and academia from all over the world joined the Symposium organized by Finnish Biobank Cooperative – FINBB and Fingenious®. The Symposium offered an insightful dive into biomedical research in collaboration with Finnish biobanks, with a spectrum of real-life cases in neurology, immunology, oncology, ophthalmology, and rare diseases. Free recording and Symposium content available – Watch the Symposium now!
Accurate data linkage from different sources is essential for generating comprehensive data sets for biomedical research. In Finland, all citizens have a unique personal ID code, which allows for reliably combining individual-level data from various data sources. The system was introduced already in the 1960s, and today, it benefits researchers who collect longitudinal data from multiple Finnish registers.
FINBB opens a call to select the biobank research project of year. The call is open between 23 October - 8 November 2023.
Biomedical research relies on a wide range of data sources to provide insights into healthcare outcomes and treatment effectiveness in real-world settings. Finnish medical registers and biobanks hold vast amounts of valuable data that can be effectively combined on an individual level. In addition, the geographical isolation of Finns has resulted in a shared unique genetic heritage, creating excellent conditions for genetic research.
Regulatory compliance is a critical element of successful RWE research. In Finland, up-to-date national legislation ensures that healthcare data in Finnish registers can be used for new scientific innovation. The current regulations allow for easier and more efficient use of social welfare and health data in research and development.
The Fingenious Ecosystem’s fourth national event was held on Thursday, 2 November 2023. Some of the best specialists in their field spoke about the latest Finnish RWE research opportunities. Browse photos and videos from the event and find out what the Fingenious Ecosystem can offer for your research.
Finnish Biobank Cooperative – FINBB has submitted an initiative to Minister of Social Security Sanni Grahn-Laasonen to improve equal treatment of patients with rare diseases in Finland. Should the initiative pass, companies could apply for a higher special rate of reimbursement for orphan drugs that are used in treating patients with rare diseases. Currently, the higher special rate of reimbursement can be applied only to some orphan drugs.
Biogen has initiated a research project with Finnish biobanks and Finnish Biobank Cooperative – FINBB to further validate genes at the complement factor H (CFH) gene locus by combining unique Finnish genetic data from the FinnGen study with proteomic data.
The team at Auria Biobank, part of Turku University Hospital’s Laboratory Division, have achieved ISO 20387:2020 accreditation. This makes Auria the fourth BBMRI-ERIC member biobank to demonstrate quality to this international standard.
Join Clinical Development, Medical Affairs and Global Strategy colleagues for a hands-on and highly interactive event in Basel to explore and discover unique opportunities due to the unique Finnish data ecosystem.
Finnish Biobanks – FINBB and Novartis, a global pharmaceutical company, have signed a master service agreement and jointly agreed to collaborate to advance medical research in Finland.
TriNetX, LLC, the global network of healthcare organizations driving real-world research to accelerate the development of new therapies, today announced that Finnish Biobanks (FINBB), a cooperative owned by the six largest hospital districts and universities in Finland and the Finnish Institute for Health and Welfare, has joined the TriNetX Network.
Finnish Biobanks – FINBB has entered a new partnership with aiwell Inc., a company focused on AI proteomics and headquartered in Tokyo, Japan. aiwell Inc.'s goal is to identify new biomarkers for various diseases, such as depression and cancer.
The event offers for the very first time an opportunity to get acquainted with what Finland has to offer for biomedical research as a One-stop-Service.
A serious or life-threatening rare disease affect more than 300 million people around the world. Approximately 7,000 rare diseases have been identified worldwide, but treatments are available for just over a hundred of them.
Finnish Biobanks – FINBB announces a research agreement with Roche. The goal of the research agreement is to generate insights to inform drug development and/or to advance practices for personalized medicine.
Use case: Biobank of Eastern Finland. By combining information on people’s lifestyles, genes and risk factors for chronic diseases, it is possible to develop increasingly effective and personalised services for the prevention of diseases. At the University of Eastern Finland, a new study has started among people who have given their consent to donate samples to the Biobank of Eastern Finland.
Biobank Borealis use case: Maternal Vitamin D deficiency is a risk factor for Offspring Autism Spectrum Disorder. Autism spectrum disorder (ASD) is a complex neurodevelopmental disorder characterized by disrupted social interactions, impaired language, stereotypic and repetitive behavior with different degrees of severity.
Tampere Biobank use case: New tools for improving management of patients with hematological malignancies by combining patient clinical data, innovative laboratory analyses on tissue samples deposited in the biobank from these patients and AI algorithms.
THL Biobank use case: lifestyle and genetic factors are associated with an increased risk of liver disease at population level as shown by studies utilizing well characterized, large population-based cohorts of THL Biobank combined with data from national Finnish registers.
Adaptive Biotechnologies, a commercial-stage biotechnology company, has initiated a research project with Finnish biobanks and Finnish Biobank Cooperative - FINBB to utilize Finnish biobank samples for development and validation of immunosequencing-based clinical testing for autoimmune disorders, such as inflammatory bowel diseases (IBD).
THL Biobank use case: To validate the use of their NMR spectroscopy technique in accurate prediction of risk for common diseases, such as heart disease, and preventive healthcare, Nightingale Health Ltd has analyzed serum samples from 40,000 sample donors of THL Biobank.
Large genome data collections are important for the effects of genes to begin to show in analyses. Therefore, genome data returned to the biobanks from research projects such as FinnGen and available via Fingenious service are of utmost importance for new scientific discoveries.
Finnish biobanks and Finnish Biobank Cooperative - FINBB have initiated a collaboration with Bayer AG enabling the global use of biobank samples in Bayer’s medical research. The aim of the collaboration is the mutual interest to enhance medical research and product development.
THL Biobank is one of the seven public biobanks that is part of the one-stop Fingenious® service managed by Finnish Biobank Cooperative -FINBB. The unique collections and services of THL Biobank are now presented with illustrations on Fingenious® website.
Tampere Biobank use case: biobank sample donors are recontacted to invite participants for a study investigating the characteristics of the epigenetic clock and developing tools for monitoring the aging of the immune system.
Helsinki Biobank use case: IndiviStatB1 study combines data from the biobanks and national registers and will bring insight into the effect of genetic factors on efficacy and tolerability of statins, the most commonly used cholesterol-lowering drugs.
Biobank Borealis use case: Vitamin D deficiency is a risk factor for developing MS both in the mother and the offspring
February 28 is the World Rare Disease Day. Professor Pentti Tienari shares his outstanding research in understanding the pathogenesis of amyotrophic lateral sclerosis (ALS).
Biobank Borealis use case: method development for early cancer detection in tissues
Assessment of the Prevalence of Complement Factor I Gene Variants in Individuals with Dry Age-Related Macular Degeneration (AMD) in Finland
14.1.2021 (This event will be held only in Finnish)
A first-time venture that benefits from the unique possibility of recontacting biobank sample donors
Fingenious use case video on glaucoma, Ophthalmologist Joni Turunen
Auria Biobank use case: Machine-learning model in prediction of nodal stage in breast cancer
THL Biobank use case: Recontacting sample donors for a study on NAFLD
FINBB and Finnish Biobank Sample Collections and Services Aid APECED Research
Biobank of Eastern Finland use case: Recontacting sample donors to study progression of type 2 diabetes
Fingenious use case video: polygenic and clinical risk scores, Professor Samuli Ripatti
FINBB becomes a FinnGen partner and is assigned a vital role in development of a domestic biomedical research ecosystem
