ArticleIntractable & rare diseases research2026
How to evaluate rare disease policy effectiveness based on policy modeling consistency (PMC) index model: A quantitative assessment of policy implementation in China.
Article in Intractable & rare diseases research, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
1 citing paper in PubMed.
- From presence to provenance: Building substantive infrastructure for China's rare disease ecosystem.Intractable & rare diseases research · 2026Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Based on the Policy Modeling Consistency (PMC) index model, this study systematically evaluates 19 national-level and 13 regional-level rare disease policy documents from 2016 to 2025, aiming to reveal the structural characteristics and consistency level of China's rare disease policy system. Using ROSTCM 6.0 software, high-frequency keywords and semantic networks from the policy texts were extracted to identify policy focus and thematic evolution. A PMC evaluation system was constructed to assign values and conduct a visual analysis of the sample policies. Results show that the average PMC index for China's rare disease policies is 5.31 (national level) and 4.94 (local level), falling within the "excellent-acceptable" range overall, indicating that the structure of China's rare disease policy system is well-developed. Among the indicators, policy nature (X2), policy function (X8), and outcome orientation (X4) scored higher, reflecting strategic planning and institutional characteristics at the national level. In contrast, incentive measures (X5), patient support (X6), and social support (X9) scored lower, highlighting deficiencies in research and development incentives, social integration, and long-term support mechanisms. Further comparisons reveal that national policies emphasize top-level design and institutional development. In contrast, local policies focus more on exploratory efforts in medical assistance and policy innovation. To optimize China's rare disease policy system, it is essential to improve incentive and social support systems, promote coordinated legislation between national and local levels, establish a national rare disease information platform and a dedicated fund, and build a comprehensive policy chain.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.