Reshaping the hierarchical medical system for rare diseases: a two-tier structure and one-stop referral network

doi:10.7189/jogh.15.03005

. 2025 Apr 11:15:03005.

doi: 10.7189/jogh.15.03005.

Reshaping the hierarchical medical system for rare diseases: a two-tier structure and one-stop referral network

Chaoyu Lei^#¹, Ying Zuo^#², Fanyi Kong^{3

4}, Hao Chen⁵, Haoxuan Cheng², Xuefei Song¹, Lufa Zhang^{2

6

7}, Huifang Zhou¹

Affiliations

¹ Department of Ophthalmology, Shanghai Ninth People's Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai Key Laboratory of Orbital Diseases and Ocular Oncology, and State Key Laboratory of Eye Health, China.
² School of International and Public Affairs, Shanghai Jiao Tong University, Shanghai, China.
³ Institute for Hospital Management, Tsinghua University, Shenzhen, Guangdong, China.
⁴ School of Healthcare Management, Tsinghua University Tsinghua Medicine, Beijing, China.
⁵ Shanghai Jiao Tong University School of Medicine, Shanghai, China.
⁶ Institute for Urban Governance, Shanghai Jiao Tong University, Shanghai, China.
⁷ Institute of Healthy Yangtze River Delta, Shanghai Jiao Tong University, Shanghai, China.

^# Contributed equally.

PMID: 40208802
PMCID: PMC11984612
DOI: 10.7189/jogh.15.03005

Reshaping the hierarchical medical system for rare diseases: a two-tier structure and one-stop referral network

Chaoyu Lei et al. J Glob Health. 2025.

. 2025 Apr 11:15:03005.

doi: 10.7189/jogh.15.03005.

Authors

Chaoyu Lei^#¹, Ying Zuo^#², Fanyi Kong^{3

4}, Hao Chen⁵, Haoxuan Cheng², Xuefei Song¹, Lufa Zhang^{2

6

7}, Huifang Zhou¹

Affiliations

¹ Department of Ophthalmology, Shanghai Ninth People's Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai Key Laboratory of Orbital Diseases and Ocular Oncology, and State Key Laboratory of Eye Health, China.
² School of International and Public Affairs, Shanghai Jiao Tong University, Shanghai, China.
³ Institute for Hospital Management, Tsinghua University, Shenzhen, Guangdong, China.
⁴ School of Healthcare Management, Tsinghua University Tsinghua Medicine, Beijing, China.
⁵ Shanghai Jiao Tong University School of Medicine, Shanghai, China.
⁶ Institute for Urban Governance, Shanghai Jiao Tong University, Shanghai, China.
⁷ Institute of Healthy Yangtze River Delta, Shanghai Jiao Tong University, Shanghai, China.

^# Contributed equally.

PMID: 40208802
PMCID: PMC11984612
DOI: 10.7189/jogh.15.03005

No abstract available

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Conflict of interest statement

Disclosure of interest: The authors completed the ICMJE Disclosure of Interest Form (available upon request from the corresponding author) and disclose no relevant interests.

References

1. Luzzatto L, Hollak CE, Cox TM, Schieppati A, Licht C, Kääriäinen H, et al. Rare diseases and effective treatments: are we delivering? Lancet. 2015;385:750–2. - PubMed
1. Marwaha S, Knowles JW, Ashley EA.A guide for the diagnosis of rare and undiagnosed disease: beyond the exome. Genome Med. 2022;14:23. - PMC - PubMed
1. Stoller JK.The challenge of rare diseases. Chest. 2018;153:1309–14. - PubMed
1. Wang Y, Sun L, Hou J.Hierarchical medical system based on big data and mobile internet: a new strategic choice in health care. JMIR Med Inform. 2017;5:e22. - PMC - PubMed
1. Rare diseases, common challenges. Nat Genet. 2022;54:215. - PubMed

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- PubMed Central

[1] Luzzatto L, Hollak CE, Cox TM, Schieppati A, Licht C, Kääriäinen H, et al. Rare diseases and effective treatments: are we delivering? Lancet. 2015;385:750–2. - PubMed

[2] Luzzatto L, Hollak CE, Cox TM, Schieppati A, Licht C, Kääriäinen H, et al. Rare diseases and effective treatments: are we delivering? Lancet. 2015;385:750–2. - PubMed

[3] Marwaha S, Knowles JW, Ashley EA.A guide for the diagnosis of rare and undiagnosed disease: beyond the exome. Genome Med. 2022;14:23. - PMC - PubMed

[4] Marwaha S, Knowles JW, Ashley EA.A guide for the diagnosis of rare and undiagnosed disease: beyond the exome. Genome Med. 2022;14:23. - PMC - PubMed

[5] Stoller JK.The challenge of rare diseases. Chest. 2018;153:1309–14. - PubMed

[6] Stoller JK.The challenge of rare diseases. Chest. 2018;153:1309–14. - PubMed

[7] Wang Y, Sun L, Hou J.Hierarchical medical system based on big data and mobile internet: a new strategic choice in health care. JMIR Med Inform. 2017;5:e22. - PMC - PubMed

[8] Wang Y, Sun L, Hou J.Hierarchical medical system based on big data and mobile internet: a new strategic choice in health care. JMIR Med Inform. 2017;5:e22. - PMC - PubMed

[9] Rare diseases, common challenges. Nat Genet. 2022;54:215. - PubMed

[10] Rare diseases, common challenges. Nat Genet. 2022;54:215. - PubMed

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Reshaping the hierarchical medical system for rare diseases: a two-tier structure and one-stop referral network

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Reshaping the hierarchical medical system for rare diseases: a two-tier structure and one-stop referral network

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