Adaptation and feasibility of the International Registry for Alzheimer's Disease and Other Dementias real-world datasets in old-age mental healthcare practice in China

BackgroundAnti-amyloid disease-modifying therapies (DMTs) for early Alzheimer's disease (AD) are entering routine care, increasing the need for harmonized, registry-ready real-world data. The International Registry for Alzheimer's Disease and Other Dementias (InRAD) proposed a minimum dataset (MDS) and extended dataset (EDS), but their applicability to psychiatry-led old age mental healthcare practices in China is uncertain.ObjectiveTo adapt the InRAD dataset for real-world AD DMT practice across multiple psychiatry institutions in China and assess the feasibility of routine data capture for the proposed MDS/EDS.MethodsWe conducted a modified Delphi consensus study and a multicenter feasibility survey. Forty-nine experts classified domains/items into the MDS or EDS using predefined agreement thresholds. Thirty-five DMT-initiating mental healthcare teams reported the routine availability of the proposed data elements.ResultsHighly consistent with InRAD, ten domains were included in the China-adapted MDS/EDS, covering patient profiles and lifestyle, diagnostic work-up and biomarkers, treatment, outcomes, safety, treatment-monitoring examinations, and registry discontinuation. However, item prioritization reflected local practice, emphasizing diagnostic traceability, functional and neuropsychiatric outcomes, caregiver burden, and structured safety capture. Feasibility results revealed that many MDS elements were collected, but the consensus-defined MDS exceeded what is currently captured in a standardized, analysis-ready format; most EDS items were moderately feasible, while WHO-5 (patient version) and DAT-scan were least feasible.ConclusionsAn InRAD-aligned dataset is broadly acceptable for psychiatry-led AD DMT practices in China, but implementation gaps remain. A phased registry approach with standardized definitions and workflow-supported capture may improve the completeness and comparability of real-world DMT evidence.

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Publication Details

Journal
Journal of Alzheimer s Disease
Published
2026-08-20
DOI
https://doi.org/10.1177/13872877261478137
Primary Topic
Dementia and Cognitive Impairment Research
Type
article
Field-Weighted Citation Impact
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article

Adaptation and feasibility of the International Registry for Alzheimer's Disease and Other Dementias real-world datasets in old-age mental healthcare practice in China

Weihong Kuang, SUN DA-LIANG, Maimaitirexiati Tuerxun, Xiangrong Zhang et al.
Journal of Alzheimer s Disease
Dementia and Cognitive Impairment Research
article

Adaptation and feasibility of the International Registry for Alzheimer's Disease and Other Dementias real-world datasets in old-age mental healthcare practice in China

Weihong Kuang, SUN DA-LIANG, Maimaitirexiati Tuerxun, Xiangrong Zhang, Huali Wang, Nan Zhang, Ming Zhang, Tao Li, Zhengluan Liao, Jinghan Lai, Sha Liu, Tao Wang, Haifeng Zhang, Shifu Xiao, Xia Li, Wei Chen, Xiaojun Xiang, Enyan Yu, Xin Yu, Frank Jessen
article en

Abstract

BackgroundAnti-amyloid disease-modifying therapies (DMTs) for early Alzheimer's disease (AD) are entering routine care, increasing the need for harmonized, registry-ready real-world data. The International Registry for Alzheimer's Disease and Other Dementias (InRAD) proposed a minimum dataset (MDS) and extended dataset (EDS), but their applicability to psychiatry-led old age mental healthcare practices in China is uncertain.ObjectiveTo adapt the InRAD dataset for real-world AD DMT practice across multiple psychiatry institutions in China and assess the feasibility of routine data capture for the proposed MDS/EDS.MethodsWe conducted a modified Delphi consensus study and a multicenter feasibility survey. Forty-nine experts classified domains/items into the MDS or EDS using predefined agreement thresholds. Thirty-five DMT-initiating mental healthcare teams reported the routine availability of the proposed data elements.ResultsHighly consistent with InRAD, ten domains were included in the China-adapted MDS/EDS, covering patient profiles and lifestyle, diagnostic work-up and biomarkers, treatment, outcomes, safety, treatment-monitoring examinations, and registry discontinuation. However, item prioritization reflected local practice, emphasizing diagnostic traceability, functional and neuropsychiatric outcomes, caregiver burden, and structured safety capture. Feasibility results revealed that many MDS elements were collected, but the consensus-defined MDS exceeded what is currently captured in a standardized, analysis-ready format; most EDS items were moderately feasible, while WHO-5 (patient version) and DAT-scan were least feasible.ConclusionsAn InRAD-aligned dataset is broadly acceptable for psychiatry-led AD DMT practices in China, but implementation gaps remain. A phased registry approach with standardized definitions and workflow-supported capture may improve the completeness and comparability of real-world DMT evidence.

Journal of Alzheimer s Disease
Central South University (CN), Sun Yat-sen University (CN), Tianjin University (CN), Shanxi Medical University (CN), Shanghai Jiao Tong University (CN), Chinese Academy of Sciences (CN), Peking University (CN), Sichuan University (CN), Ruijin Hospital (CN), Sir Run Run Shaw Hospital (CN), Tianjin Medical University General Hospital (CN), West China Hospital of Sichuan University (CN), Urumqi 4th People's Hospital (CN), Tianjin Anding Hospital (CN), Qingzhou City People's Hospital (CN), Nanjing Brain Hospital (CN), First Hospital of Shanxi Medical University (CN), Zhejiang Provincial People's Hospital (CN), Third Affiliated Hospital of Sun Yat-sen University (CN), University Hospital Cologne (DE), Second Xiangya Hospital of Central South University (CN), Peking University Sixth Hospital (CN), Zhejiang University (CN), Nanjing Medical University (CN)
National Natural Science Foundation of China
Partnerships for the goals
Openalex Percentile: Top 9%
Dementia and Cognitive Impairment Research
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