Similar articles for PMID: 29284292

Year	Number of Results
1999	1
2000	1
2008	3
2010	6
2011	5
2012	8
2013	11
2014	12
2015	8
2016	9
2017	32
2018	16
2019	14
2020	9
2021	15
2022	13
2023	3
2024	0

1

National Rare Diseases Registry System of China and Related Cohort Studies: Vision and Roadmap.

Feng S, Liu S, Zhu C, Gong M, Zhu Y, Zhang S. Feng S, et al. Hum Gene Ther. 2018 Feb;29(2):128-135. doi: 10.1089/hum.2017.215. Hum Gene Ther. 2018. PMID: 29284292

2

Innovation in Informatics to Improve Clinical Care and Drug Accessibility for Rare Diseases in China.

Liu P, Gong M, Li J, Baynam G, Zhu W, Zhu Y, Chen L, Gu W, Zhang S. Liu P, et al. Front Pharmacol. 2021 Oct 15;12:719415. doi: 10.3389/fphar.2021.719415. eCollection 2021. Front Pharmacol. 2021. PMID: 34721018 Free PMC article.

3

Rare Diseases: Joining Mainstream Research and Treatment Based on Reliable Epidemiological Data.

Groft SC, Posada de la Paz M. Groft SC, et al. Adv Exp Med Biol. 2017;1031:3-21. doi: 10.1007/978-3-319-67144-4_1. Adv Exp Med Biol. 2017. PMID: 29214563 Review.

4

National Rare Diseases Registry System (NRDRS): China's first nation-wide rare diseases demographic analyses.

Guo J, Liu P, Chen L, Lv H, Li J, Yu W, Xu K, Zhu Y, Wu Z, Tian Z, Jin Y, Yang R, Gu W, Zhang S; Administrative Group of National Rare Diseases Registry System of China. Guo J, et al. Orphanet J Rare Dis. 2021 Dec 18;16(1):515. doi: 10.1186/s13023-021-02130-7. Orphanet J Rare Dis. 2021. PMID: 34922584 Free PMC article.

5

Rare disease registries: a call to action.

Lacaze P, Millis N, Fookes M, Zurynski Y, Jaffe A, Bellgard M, Winship I, McNeil J, Bittles AH. Lacaze P, et al. Intern Med J. 2017 Sep;47(9):1075-1079. doi: 10.1111/imj.13528. Intern Med J. 2017. PMID: 28891182

6

The pooling of manpower and resources through the establishment of European reference networks and rare disease patient registries is a necessary area of collaboration for rare renal disorders.

Parker S. Parker S. Nephrol Dial Transplant. 2014 Sep;29 Suppl 4:iv9-14. doi: 10.1093/ndt/gfu094. Nephrol Dial Transplant. 2014. PMID: 25165190 Review.

7

Improved Diagnosis and Care for Rare Diseases through Implementation of Precision Public Health Framework.

Baynam G, Bowman F, Lister K, Walker CE, Pachter N, Goldblatt J, Boycott KM, Gahl WA, Kosaki K, Adachi T, Ishii K, Mahede T, McKenzie F, Townshend S, Slee J, Kiraly-Borri C, Vasudevan A, Hawkins A, Broley S, Schofield L, Verhoef H, Groza T, Zankl A, Robinson PN, Haendel M, Brudno M, Mattick JS, Dinger ME, Roscioli T, Cowley MJ, Olry A, Hanauer M, Alkuraya FS, Taruscio D, Posada de la Paz M, Lochmüller H, Bushby K, Thompson R, Hedley V, Lasko P, Mina K, Beilby J, Tifft C, Davis M, Laing NG, Julkowska D, Le Cam Y, Terry SF, Kaufmann P, Eerola I, Norstedt I, Rath A, Suematsu M, Groft SC, Austin CP, Draghia-Akli R, Weeramanthri TS, Molster C, Dawkins HJS. Baynam G, et al. Adv Exp Med Biol. 2017;1031:55-94. doi: 10.1007/978-3-319-67144-4_4. Adv Exp Med Biol. 2017. PMID: 29214566 Review.

8

Development of a pilot rare disease registry: a focus group study of initial steps towards the establishment of a rare disease ecosystem in Slovenia.

Stanimirovic D, Murko E, Battelino T, Groselj U. Stanimirovic D, et al. Orphanet J Rare Dis. 2019 Jul 9;14(1):172. doi: 10.1186/s13023-019-1146-x. Orphanet J Rare Dis. 2019. PMID: 31288838 Free PMC article.

9

National Registry of Designated Intractable Diseases in Japan: Present Status and Future Prospects.

Kanatani Y, Tomita N, Sato Y, Eto A, Omoe H, Mizushima H. Kanatani Y, et al. Neurol Med Chir (Tokyo). 2017 Jan 15;57(1):1-7. doi: 10.2176/nmc.st.2016-0135. Epub 2016 Sep 21. Neurol Med Chir (Tokyo). 2017. PMID: 27666154 Free PMC article.

10

Future of Rare Diseases Research 2017-2027: An IRDiRC Perspective.

Austin CP, Cutillo CM, Lau LPL, Jonker AH, Rath A, Julkowska D, Thomson D, Terry SF, de Montleau B, Ardigò D, Hivert V, Boycott KM, Baynam G, Kaufmann P, Taruscio D, Lochmüller H, Suematsu M, Incerti C, Draghia-Akli R, Norstedt I, Wang L, Dawkins HJS; International Rare Diseases Research Consortium (IRDiRC). Austin CP, et al. Clin Transl Sci. 2018 Jan;11(1):21-27. doi: 10.1111/cts.12500. Epub 2017 Oct 23. Clin Transl Sci. 2018. PMID: 28796445 Free PMC article. Review. No abstract available.

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