Abstract
Neurological and psychiatric (mental health) disorders have a large impact on health burden globally. Cognitive disorders (including dementia) and stroke are leading causes of disability. Mental health disorders, including depression, contribute up to one-third of total years lived with disability. The Neurological and mental health Global Epidemiology Network (NeuroGEN) is an international multi-database network that harnesses administrative and electronic medical records from Australia, Asia, Europe and North America. Using these databases NeuroGEN will investigate medication use and health outcomes in neurological and mental health disorders. A key objective of NeuroGEN is to facilitate high-quality observational studies to address evidence-practice gaps where randomized controlled trials do not provide sufficient information on medication benefits and risks that is specific to vulnerable population groups. International multi-database research facilitates comparisons across geographical areas and jurisdictions, increases statistical power to investigate small subpopulations or rare outcomes, permits early post-approval assessment of safety and effectiveness, and increases generalisability of results. Through bringing together international researchers in pharmacoepidemiology, NeuroGEN has the potential to be paradigm-changing for observational research to inform evidence-based prescribing. The first focus of NeuroGEN will be to address evidence-gaps in the treatment of chronic comorbidities in people with dementia.
| Original language | English |
|---|---|
| Pages (from-to) | 897-913 |
| Number of pages | 17 |
| Journal | CNS Drugs |
| Volume | 34 |
| Issue number | 9 |
| DOIs | |
| Publication status | Published - 2020 Sep 1 |
All Science Journal Classification (ASJC) codes
- Clinical Neurology
- Psychiatry and Mental health
- Pharmacology (medical)
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Application of Healthcare ‘Big Data’ in CNS Drug Research : The Example of the Neurological and mental health Global Epidemiology Network (NeuroGEN). / Ilomäki, Jenni; Bell, J. Simon; Chan, Adrienne Y.L.; Tolppanen, Anna Maija; Luo, Hao; Wei, Li; Lai, Edward Chia Cheng; Shin, Ju Young; De Paoli, Giorgia; Pajouheshnia, Romin; Ho, Frederick K.; Reynolds, Lorenna; Lau, Kui Kai; Crystal, Stephen; Lau, Wallis C.Y.; Man, Kenneth K.C.; Brauer, Ruth; Chan, Esther W.; Shen, Chin Yao; Kim, Ju Hwan; Lum, Terry Y.S.; Hartikainen, Sirpa; Koponen, Marjaana; Rooke, Evelien; Bazelier, Marloes; Klungel, Olaf; Setoguchi, Soko; Pell, Jill P.; Cook, Sharon; Wong, Ian C.K.
In: CNS Drugs, Vol. 34, No. 9, 01.09.2020, p. 897-913.Research output: Contribution to journal › Article › peer-review
TY - JOUR
T1 - Application of Healthcare ‘Big Data’ in CNS Drug Research
T2 - The Example of the Neurological and mental health Global Epidemiology Network (NeuroGEN)
AU - Ilomäki, Jenni
AU - Bell, J. Simon
AU - Chan, Adrienne Y.L.
AU - Tolppanen, Anna Maija
AU - Luo, Hao
AU - Wei, Li
AU - Lai, Edward Chia Cheng
AU - Shin, Ju Young
AU - De Paoli, Giorgia
AU - Pajouheshnia, Romin
AU - Ho, Frederick K.
AU - Reynolds, Lorenna
AU - Lau, Kui Kai
AU - Crystal, Stephen
AU - Lau, Wallis C.Y.
AU - Man, Kenneth K.C.
AU - Brauer, Ruth
AU - Chan, Esther W.
AU - Shen, Chin Yao
AU - Kim, Ju Hwan
AU - Lum, Terry Y.S.
AU - Hartikainen, Sirpa
AU - Koponen, Marjaana
AU - Rooke, Evelien
AU - Bazelier, Marloes
AU - Klungel, Olaf
AU - Setoguchi, Soko
AU - Pell, Jill P.
AU - Cook, Sharon
AU - Wong, Ian C.K.
N1 - Funding Information: The Neurological and mental health Global Epidemiology Network (NeuroGEN) ( https://www.neurogen.hku.hk/ ) is an international ‘big data’ collaboration platform established at a multidisciplinary meeting of 30 researchers from eight international geographical regions in Hong Kong in October 2018 []. NeuroGEN evolved out of the PharmAlliance collaboration in pharmacoepidemiology between Monash University, University College London (UCL) and University of North Carolina at Chapel Hill (UNC). PharmAlliance is a strategic partnership of staff and students at the Monash University Faculty of Pharmacy and Pharmaceutical Sciences, UCL School of Pharmacy and UNC Eshelman School of Pharmacy. PharmAlliance provides strategic seed funding for multi-institutional initiatives in research, practice and education. The purpose of the October 2018 meeting was to explore data available in different jurisdictions, identify the breadth of clinical and methodological expertise, and to set research priorities. Research priority setting involved identifying 29 topics, of which six were prioritized highest. A second multidisciplinary meeting was held in London in August 2019 that included new member institutions and researchers. At this meeting, respective research groups presented and discussed their progress in relation to the existing and new topics. A map of current member regions is presented in Fig. . Initial seed funding provided by PharmAlliance has been supplemented by grants from the Victorian Medical Research Acceleration Fund, University College London (UCL)—Peking University Strategic Partnership Grant, and University of Hong Kong—UCL Strategic Partnership Grant and Research Grant Council of Hong Kong. The Dementia Australia Research Foundation—Yulgilbar Innovation Grant was received to investigate guideline-recommended medication use in people with dementia and chronic comorbidities. This Four Continents For Dementia (4C4D) program involves Australia, Hong Kong, the UK, and the US. Funding Information: The Pharmacoepidemiology and Clinical Pharmacy group at Utrecht University (UU) has a clinical, policy and methodological focus. The UU group has methodological expertise in preventing and/or controlling for confounding, analysis of effect modification and conducting multi-database analysis. The primary data sources used for large pharmacoepidemiological studies include the Dutch PHARMO database ( http://www.pharmo.nl ) and the UK Clinical Practice Research Datalink (CPRD) []. The CPRD is subject to the UK Data Protection Act 2018 and the EU GDPR. Data obtained have been anonymised and consent was previously collected by the general practices where patients can opt-out. In PHARMO, patient information is de-identified and the requirement for individual consent is waived unless an intervention is planned. All use of the data requires approval by the independent Compliance Committee STIZON/PHARMO Institute, in compliance with the Netherlands Personal Data Protection Act and Medical Treatment Contract Act. Data access is funded by the Utrecht Institute for Pharmaceutical Sciences. The UU group coordinate the European Research Network of Pharmacovigilance and Pharmacoepidemiology (EU PE&PV) and have developed novel methodologies for the conduct of multi-country, multi-database studies on variability of medication use and health outcomes [–]. Funding Information: Acetylcholinesterase inhibitors (AChEIs) are the most widely prescribed medications for dementia, although efficacy [, ] and cost effectiveness [, ] are modest. Non-adherence and non-persistence reduce potential benefits, with a systematic review of five RCTs reporting that discontinuation is associated with a significant decline in cognition and worsening of neuropsychiatric symptoms []. This highlights the importance of persistence in maximising benefit. This study will investigate adherence and persistence to AChEIs across the NeuroGEN partners. Australia, South Korea and Taiwan have analysed their respective data using a common study protocol. The study will utilize the proportion of days covered to estimate adherence from medication dispensing and prescribing databases. Persistence will be estimated using a prespecified gap of no dispensing or prescribing. This study will permit a comparison adherence and persistence using standardized definitions and methodology. This program of work is funded through the National Health and Medical Research Council (NHMRC) Boosting Dementia Leadership Fellowship Scheme. Funding Information: Based on the ‘cognitive footprint’ of medical history, this population-based, case-control study will aim to develop and validate an algorithm for predicting dementia using machine learning []. The algorithm will be trained using territory-wide EMRs from the CDARS in Hong Kong, and tested both locally and externally in other databases (e.g. the UK THIN and the Finnish MEDALZ). The CDARS currently hosts records from more than 70,000 people with dementia diagnoses between 2001 and 2018. Potential protective/risk factors, which will be selected based on the cognitive footprint theory, will be modelled holistically. It is anticipated that the modelling will include analyses of diagnostic data, laboratory test results and the prescription of antidepressants, antipsychotics, statins and polypharmacy. Other than a set of Hong Kong-specific factors, a set of common factors that are shared by other databases will be identified to maximize interoperability. The subsequent common algorithm, to be derived from real-world data in Hong Kong, may then be suitable for embedding into other health information systems. Patients with a high risk or likelihood of dementia can be efficiently identified to permit targeting of risk-reduction programs. A secondary objective of this project is to estimate survival from the point of a recorded diagnosis of dementia in Hong Kong, Canada, Finland, Germany, Korea, Taiwan, UK and US. This project will aggregate large population-scale data from different geographical regions. The project is ongoing and is expected to be completed by June 2022. This project is funded by the Research Grant Council of Hong Kong under the Early Career Scheme. Funding Information: One of the objectives of NeuroGEN is capacity building and training the next generation of pharmacoepidemiologists. This is being achieved by providing opportunities to early career researchers, including PhD candidates and post-doctoral researchers. For example, PhD students from Monash University, Naresuan University (Thailand) and Princess Norah Bint Abdul Rahman University (Saudi Arabia) have conducted exchanges to UCL to conduct pharmacoepidemiological studies [–]. Similarly, a PhD student from Monash University has conducted an exchange to HKU, and researchers from Utrecht University and UCL have conducted exchanges to Monash University. A bi-lateral exchange of post-doctoral researchers from University of Eastern Finland and Monash University has taken place []. These exchanges have been funded through the Royal Golden Jubilee PhD Program (Thailand), Newton Fund (UK), Saudi Arabian Ministry of Higher Education, the Australian Government Endeavour Fellowship Scheme, Monash Doctoral Program and the NHMRC Boosting Dementia Leadership Scheme. Funding Information: This research was supported by PharmAlliance, Victorian Medical Research Acceleration Fund, Dementia Australia Research Foundation—Yulgilbar Innovation Grant 2018, Dementia Australia Research Grant and The University of Hong Kong–University College London (HKU-UCL) and University College London–Peking University (UCL-PKU) Strategic Partnership Fund. Funding Information: Jenni Ilomäki has received consulting fees from AstraZeneca unrelated to the submitted work, and has received grant funding from the NHMRC, Victorian Government Department of Health and Human Services, Dementia Australia Research Foundation and National Breast Cancer Foundation. J. Simon Bell is supported by an NHMRC Boosting Dementia Leadership Fellowship, and has received grant funding from the NHMRC, Victorian Government Department of Health and Human Services, Dementia Australia Research Foundation, GlaxoSmithKline, and several aged care provider organizations, unrelated to the submitted work and all paid to the employing institution. Adrienne Y.L. Chan reports no receipt of research funding. Anna-Maija Tolppanen has received grant funding from the Academy of Finland. Hao Luo has received grants from the Research Grants Council (RGC; Hong Kong), as well as consulting fees from the Hong Kong Jockey Club Charities unrelated to the submitted work. Li Wei has received research grants from the European Medicines Agency and the UK Medical Research Council, National Institute for Health Research, and charities, outside the submitted work. Edward Chia-Cheng Lai has received research grants from the Ministry of Science and Technology (MOST) of Taiwan, National Health Insurance Administration of Taiwan, and National Cheng Kung University Hospital, outside the submitted work. Ju-Young Shin has received research funding from the Ministry of Food and Drug Safety, Ministry of Health and Welfare, National Research Foundation of Republic of Korea, Amgen, Pfizer, Hoffmann-La Roche, Dong-A ST, and Yungjin pharmaceutical, outside the submitted work. Giorgia De Paoli reports no receipt of research funding. Romin Pajouheshnia has no funding or conflicts of interest to declare. Frederick K. Ho has received research funding from the Wellcome Trust Institutional Strategic Support Fund via the University of Glasgow, outside the submitted work. Lorenna Reynolds is partly funded by the NHMRC Boosting Dementia Scheme. Kui Kai Lau has received grants from the Research Fund Secretariat of the Food and Health Bureau HKSAR, Boehringer Ingelheim, Pfizer, Amgen and Sanofi, as well as consulting fees and honorarium from Boehringer Ingelheim and Sanofi, all of which are unrelated to the submitted work. Stephen Crystal is supported by R01-HS026001, DA047347, R18-HS023258, and UL1TR003017. Wallis C.Y. Lau has no conflicts of interest to declare. Kenneth K.C. Man is supported by the C W Maplethorpe Fellowship and has received consulting fees from IQVIA Inc., unrelated to the submitted work. Ruth Brauer has no conflicts of interest to declare. Esther W. Chan has received research grants from the RGC (Hong Kong), Narcotics Division of the Security Bureau of the Government of the Hong Kong SAR, Research Fund Secretariat of the Food and Health Bureau, National Natural Science Fund of China, NHMRC (Australia), Wellcome Trust, Bayer, Bristol-Myers Squibb, Pfizer, Janssen, Amgen, and Takeda, outside the submitted work. Chin-Yao Shen is supported by research grants from the National Cheng Kung University Hospital, Tainan, Taiwan. Ju Hwan Kim reports no receipt of research funding. Terry Y.S. Lum has received research grants from the RGC (Hong Kong), the Hong Kong Jockey Club Charities, the Social Welfare Department of the HKSAR Government, the Hong Kong Housing Society, the Simon KY Lee Foundation, and the Templeton World Charity Foundation, outside the submitted work. Sirpa Hartikainen has received lecturing fees from Astellas, unrelated to the submitted work. Marjaana Koponen has no conflicts of interest to declare. Evelien Rooke has no conflicts of interest to declare. Marloes Bazelier has no funding or conflicts of interest to declare. Olaf Klungel has no funding or conflicts of interest to declare. Soko Setoguchi has received research grants from the National Institutes of Health, Cystic Fibrosis Foundation, Pfizer and BMS, and served as a consultant for the US FDA, Pharmaceuticals and Medical Devices Agency (Japan), Pfizer, Merck, and Medtronic. Jill P. Pell has received research funding from the Scottish Government, Health Data Research UK, Medical Research Council, Wellbeing of Women, and National Institute for Health Research, outside the submitted work. Sharon Cook is supported by R01-HS026001, R18-HS023258, R01-DA045872, R01-DA047347 and UL1TR003017. Ian C.K. Wong has received research funding, outside the submitted work, from Amgen, Bristol-Myers Squibb, Pfizer, Janssen, Bayer, GSK, Novartis, the Hong Kong RGC, the Hong Kong Health and Medical Research Fund, National Institute for Health Research in England, European Commission, and NHMRC (Australia), and has also received speaker fees from Janssen and Medice in the previous 3 years.
PY - 2020/9/1
Y1 - 2020/9/1
N2 - Neurological and psychiatric (mental health) disorders have a large impact on health burden globally. Cognitive disorders (including dementia) and stroke are leading causes of disability. Mental health disorders, including depression, contribute up to one-third of total years lived with disability. The Neurological and mental health Global Epidemiology Network (NeuroGEN) is an international multi-database network that harnesses administrative and electronic medical records from Australia, Asia, Europe and North America. Using these databases NeuroGEN will investigate medication use and health outcomes in neurological and mental health disorders. A key objective of NeuroGEN is to facilitate high-quality observational studies to address evidence-practice gaps where randomized controlled trials do not provide sufficient information on medication benefits and risks that is specific to vulnerable population groups. International multi-database research facilitates comparisons across geographical areas and jurisdictions, increases statistical power to investigate small subpopulations or rare outcomes, permits early post-approval assessment of safety and effectiveness, and increases generalisability of results. Through bringing together international researchers in pharmacoepidemiology, NeuroGEN has the potential to be paradigm-changing for observational research to inform evidence-based prescribing. The first focus of NeuroGEN will be to address evidence-gaps in the treatment of chronic comorbidities in people with dementia.
AB - Neurological and psychiatric (mental health) disorders have a large impact on health burden globally. Cognitive disorders (including dementia) and stroke are leading causes of disability. Mental health disorders, including depression, contribute up to one-third of total years lived with disability. The Neurological and mental health Global Epidemiology Network (NeuroGEN) is an international multi-database network that harnesses administrative and electronic medical records from Australia, Asia, Europe and North America. Using these databases NeuroGEN will investigate medication use and health outcomes in neurological and mental health disorders. A key objective of NeuroGEN is to facilitate high-quality observational studies to address evidence-practice gaps where randomized controlled trials do not provide sufficient information on medication benefits and risks that is specific to vulnerable population groups. International multi-database research facilitates comparisons across geographical areas and jurisdictions, increases statistical power to investigate small subpopulations or rare outcomes, permits early post-approval assessment of safety and effectiveness, and increases generalisability of results. Through bringing together international researchers in pharmacoepidemiology, NeuroGEN has the potential to be paradigm-changing for observational research to inform evidence-based prescribing. The first focus of NeuroGEN will be to address evidence-gaps in the treatment of chronic comorbidities in people with dementia.
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UR - http://www.scopus.com/inward/citedby.url?scp=85086790027&partnerID=8YFLogxK
U2 - 10.1007/s40263-020-00742-4
DO - 10.1007/s40263-020-00742-4
M3 - Article
C2 - 32572794
AN - SCOPUS:85086790027
VL - 34
SP - 897
EP - 913
JO - CNS Drugs
JF - CNS Drugs
SN - 1172-7047
IS - 9
ER -