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

Abstract

Purpose

To describe and categorize detailed components of databases in the Neurological and Mental Health Global Epidemiology Network (NeuroGEN).

Methods

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.

Results

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.

Conclusion

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.

Keywords:

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

Data Sharing Statement

All data were available upon reasonable request by contacting Edward Chia-Cheng Lai.

Author Contributions

All authors made substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; took part in drafting the article or revising it critically for important intellectual content; agreed to submit to the current journal; gave final approval of the version to be published; and agreed to be accountable for all aspects of the work.

Disclosure

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.