Cross-Regional Data Initiative for the Assessment and Development of Treatment for Neurological and Mental Disorders.

NeuroGEN Neurological and Mental Health Global Epidemiology Network data repository meta-data

Journal

Clinical epidemiology
ISSN: 1179-1349
Titre abrégé: Clin Epidemiol
Pays: New Zealand
ID NLM: 101531700

Informations de publication

Date de publication:
2023
Historique:
received: 03 07 2023
accepted: 04 11 2023
medline: 26 12 2023
pubmed: 26 12 2023
entrez: 26 12 2023
Statut: epublish

Résumé

To describe and categorize detailed components of databases in the Neurological and Mental Health Global Epidemiology Network (NeuroGEN). An online 132-item questionnaire was sent to key researchers and data custodians of NeuroGEN in North America, Europe, Asia and Oceania. From the responses, we assessed data characteristics including population coverage, data follow-up, clinical information, validity of diagnoses, medication use and data latency. We also evaluated the possibility of conversion into a common data model (CDM) to implement a federated network approach. Moreover, we used radar charts to visualize the data capacity assessments, based on different perspectives. The results indicated that the 15 databases covered approximately 320 million individuals, included in 7 nationwide claims databases from Australia, Finland, South Korea, Taiwan and the US, 6 population-based electronic health record databases from Hong Kong, Scotland, Taiwan, the Netherlands and the UK, and 2 biomedical databases from Taiwan and the UK. The 15 databases showed good potential for a federated network approach using a common data model. Our study provided publicly accessible information on these databases for those seeking to employ real-world data to facilitate current assessment and future development of treatments for neurological and mental disorders.

Identifiants

pubmed: 38146486
doi: 10.2147/CLEP.S426485
pii: 426485
pmc: PMC10749544
doi:

Types de publication

Journal Article

Langues

eng

Pagination

1241-1252

Informations de copyright

© 2023 Tsai et al.

Déclaration de conflit d'intérêts

ECCL reports research funding outside the submitted work from Amgen, Pfizer, Sanofi, Takeda, Roche, IQVIA, the Taiwan National Science and Technology Council (ID:111-2628-B-006-007-) and the Taiwan National Health Research Institutes. EWC reports grants from Research Grants Council (RGC, Hong Kong), Research Fund Secretariat of the Food and Health Bureau, National Natural Science Fund of China, Wellcome Trust, Bayer, Bristol-Myers Squibb, Pfizer, Janssen, Amgen, Takeda and the Narcotics Division of the Security Bureau of the Hong Kong Special Administrative Region; a honorarium from the Hospital Authority; outside the submitted work. CSLC has received grants from the Food and Health Bureau of the Hong Kong Government, Hong Kong Research Grant Council, Hong Kong Innovation and Technology Commission, Pfizer, IQVIA, MSD and Amgen; and personal fees from PrimeVigilance; outside the submitted work. WL reports a research grant from the AIR@InnoHK administered by the Innovation and Technology Commission outside the submitted work. HL has received grants from the Research Grants Council of Hong Kong, outside the submitted work. JSB is supported by a National Health and Medical Research Council (NHMRC) Boosting Dementia Research Leadership Fellowship and has received grant funding or consulting funds from the NHMRC, Medical Research Future Fund, Victorian Government Department of Health and Human Services, Dementia Australia Research Foundation, Yulgilbar Foundation, Aged Care Quality and Safety Commission, Dementia Centre for Research Collaboration, Pharmaceutical Society of Australia, Society of Hospital Pharmacists of Australia, GlaxoSmithKline Supported Studies Programme, Amgen and several aged care provider organizations unrelated to this work. All grants and consulting funds were paid to the employing institution. AMT reports research funding outside the submitted work from Amgen. ICKW reports research funding outside the submitted work from Amgen, Bristol-Myers Squibb, Pfizer, Janssen, Bayer, GSK, Novartis, the Hong Kong Research Grants Council, the Food and Health Bureau of the Government of the Hong Kong Special Administrative Region, National Institute for Health Research in England, European Commission and the National Health and Medical Research Council in Australia; and is a non-executive director of Jacobson Medical in Hong Kong and a consultant to the World Health Organization. The authors report no other conflicts of interest in this work.

Auteurs

Daniel Hsiang-Te Tsai (DH)

School of Pharmacy, Institute of Clinical Pharmacy and Pharmaceutical Sciences, College of Medicine, National Cheng Kung University, Tainan, Taiwan.
Centre for Neonatal and Paediatric Infection, St George's University of London, London, UK.

J Simon Bell (JS)

Centre for Medicine Use and Safety, Faculty of Pharmacy and Pharmaceutical Sciences, Monash University, Melbourne, Australia.

Shahab Abtahi (S)

Division of Pharmacoepidemiology and Clinical Pharmacology, Utrecht Institute for Pharmaceutical Sciences, Utrecht University, Utrecht, the Netherlands.

Brenda N Baak (BN)

PHARMO Institute for Drug Outcomes Research, Utrecht, the Netherlands.

Marloes T Bazelier (MT)

Division of Pharmacoepidemiology and Clinical Pharmacology, Utrecht Institute for Pharmaceutical Sciences, Utrecht University, Utrecht, the Netherlands.

Ruth Brauer (R)

Research Department of Practice and Policy, UCL School of Pharmacy, London, UK.

Adrienne Y L Chan (AYL)

Research Department of Practice and Policy, UCL School of Pharmacy, London, UK.
Groningen Research Institute of Pharmacy, Unit of Pharmacotherapy, -Epidemiology and -Economics, University of Groningen, Groningen, the Netherlands.
Department of Pharmacology and Pharmacy, Li Ka Shing Faculty of Medicine, University of Hong Kong, Hong Kong, Special Administrative Region, People's Republic of China.
Laboratory of Data Discovery for Health (D24H), Hong Kong Science Park, Hong Kong, Special Administrative Region, People's Republic of China.

Esther W Chan (EW)

Laboratory of Data Discovery for Health (D24H), Hong Kong Science Park, Hong Kong, Special Administrative Region, People's Republic of China.
Centre for Safe Medication Practice and Research, Department of Pharmacology and Pharmacy, Li Ka Shing Faculty of Medicine, University of Hong Kong, Hong Kong, Special Administrative Region, People's Republic of China.
Department of Pharmacy, the University of Hong Kong-Shenzhen Hospital, Shenzhen, People's Republic of China.
The University of Hong Kong Shenzhen Institute of Research and Innovation, Shenzhen, People's Republic of China.

Haoqian Chen (H)

Center for Pharmacoepidemiology and Treatment Science (PETS), Institute for Health, Rutgers University, New Brunswick, NJ, USA.

Celine S L Chui (CSL)

Laboratory of Data Discovery for Health (D24H), Hong Kong Science Park, Hong Kong, Special Administrative Region, People's Republic of China.
School of Nursing, Li Ka Shing Faculty of Medicine, University of Hong Kong, Hong Kong, Special Administrative Region, People's Republic of China.
School of Public Health, Li Ka Shing Faculty of Medicine, University of Hong Kong, Hong Kong, Special Administrative Region, People's Republic of China.

Sharon Cook (S)

Center for Health Services Research, Rutgers University, New Brunswick, NJ, USA.

Stephen Crystal (S)

Center for Health Services Research, Rutgers University, New Brunswick, NJ, USA.

Poonam Gandhi (P)

Center for Pharmacoepidemiology and Treatment Science (PETS), Institute for Health, Rutgers University, New Brunswick, NJ, USA.

Sirpa Hartikainen (S)

Kuopio Research Centre of Geriatric Care and School of Pharmacy, University of Eastern Finland, Kuopio, Finland.

Frederick K Ho (FK)

School of Health and Wellbeing, University of Glasgow, Glasgow, UK.

Shao-Ti Hsu (ST)

School of Pharmacy, Institute of Clinical Pharmacy and Pharmaceutical Sciences, College of Medicine, National Cheng Kung University, Tainan, Taiwan.

Jenni Ilomäki (J)

Centre for Medicine Use and Safety, Faculty of Pharmacy and Pharmaceutical Sciences, Monash University, Melbourne, Australia.

Ju Hwan Kim (JH)

School of Pharmacy, Sungkyunkwan University, Suwon, South Korea.

Olaf H Klungel (OH)

Division of Pharmacoepidemiology and Clinical Pharmacology, Utrecht Institute for Pharmaceutical Sciences, Utrecht University, Utrecht, the Netherlands.

Marjaana Koponen (M)

Kuopio Research Centre of Geriatric Care and School of Pharmacy, University of Eastern Finland, Kuopio, Finland.

Wallis C Y Lau (WCY)

Research Department of Practice and Policy, UCL School of Pharmacy, London, UK.
Department of Pharmacology and Pharmacy, Li Ka Shing Faculty of Medicine, University of Hong Kong, Hong Kong, Special Administrative Region, People's Republic of China.
Laboratory of Data Discovery for Health (D24H), Hong Kong Science Park, Hong Kong, Special Administrative Region, People's Republic of China.

Kui Kai Lau (KK)

Division of Neurology, Department of Medicine, School of Clinical Medicine, Li Ka Shing Faculty of Medicine, University of Hong Kong, Hong Kong, Special Administrative Region, People's Republic of China.
State Key Laboratory of Brain and Cognitive Sciences, University of Hong Kong, Hong Kong, Special Administrative Region, People's Republic of China.

Terry Y S Lum (TYS)

Department of Social Work and Social Administration, University of Hong Kong, Hong Kong, Special Administrative Region, People's Republic of China.

Hao Luo (H)

Department of Social Work and Social Administration, University of Hong Kong, Hong Kong, Special Administrative Region, People's Republic of China.

Kenneth K C Man (KKC)

Research Department of Practice and Policy, UCL School of Pharmacy, London, UK.
Department of Pharmacology and Pharmacy, Li Ka Shing Faculty of Medicine, University of Hong Kong, Hong Kong, Special Administrative Region, People's Republic of China.
Laboratory of Data Discovery for Health (D24H), Hong Kong Science Park, Hong Kong, Special Administrative Region, People's Republic of China.

Jill P Pell (JP)

School of Health and Wellbeing, University of Glasgow, Glasgow, UK.

Soko Setoguchi (S)

Center for Pharmacoepidemiology and Treatment Science (PETS), Institute for Health, Rutgers University, New Brunswick, NJ, USA.
Department of Medicine, Rutgers Robert Wood Johnson Medical School and Pharmacoepidemiology and Treatments Science, Institute for Health, Rutgers University, New Brunswick, NJ, USA.

Shih-Chieh Shao (SC)

School of Pharmacy, Institute of Clinical Pharmacy and Pharmaceutical Sciences, College of Medicine, National Cheng Kung University, Tainan, Taiwan.
Department of Pharmacy, Keelung Chang Gung Memorial Hospital, Keelung, Taiwan.

Chin-Yao Shen (CY)

School of Pharmacy, Institute of Clinical Pharmacy and Pharmaceutical Sciences, College of Medicine, National Cheng Kung University, Tainan, Taiwan.

Ju-Young Shin (JY)

School of Pharmacy, Sungkyunkwan University, Suwon, South Korea.
Samsung Advanced Institute for Health Sciences & Technology, Sungkyunkwan University, Seoul, South Korea.
Department of Biohealth Regulatory Science, Sungkyunkwan University, Seoul, South Korea.

Patrick C Souverein (PC)

Division of Pharmacoepidemiology and Clinical Pharmacology, Utrecht Institute for Pharmaceutical Sciences, Utrecht University, Utrecht, the Netherlands.

Anna-Maija Tolppanen (AM)

Kuopio Research Centre of Geriatric Care and School of Pharmacy, University of Eastern Finland, Kuopio, Finland.

Li Wei (L)

Research Department of Practice and Policy, UCL School of Pharmacy, London, UK.
Laboratory of Data Discovery for Health (D24H), Hong Kong Science Park, Hong Kong, Special Administrative Region, People's Republic of China.

Ian C K Wong (ICK)

Research Department of Practice and Policy, UCL School of Pharmacy, London, UK.
Department of Pharmacology and Pharmacy, Li Ka Shing Faculty of Medicine, University of Hong Kong, Hong Kong, Special Administrative Region, People's Republic of China.
Laboratory of Data Discovery for Health (D24H), Hong Kong Science Park, Hong Kong, Special Administrative Region, People's Republic of China.
Aston Pharmacy School, Aston University, Birmingham, UK.

Edward Chia-Cheng Lai (EC)

School of Pharmacy, Institute of Clinical Pharmacy and Pharmaceutical Sciences, College of Medicine, National Cheng Kung University, Tainan, Taiwan.

Classifications MeSH