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Rare kidney disease registries: A scoping review on characteristics and lessons learnt.

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Title: Rare kidney disease registries: A scoping review on characteristics and lessons learnt.
Authors: Mahdian SZ; Department of Health Information Management, School of Health Management and Information Sciences, Iran University of Medical Sciences, Tehran, Iran., Hooman N; Ali Asghar Clinical Research Development Centre (AACRDC), Department of Pediatrics, School of Medicine, Iran University of Medical Sciences, Tehran, Iran., Sheikhtaheri A; Health Management and Economics Research Centre, Health Management Research Institute, Iran University of Medical Sciences, Tehran, Iran.; Digital Health and Artificial Intelligence in Medicine Research Unit, School of Health Management and Information Sciences, Iran University of Medical Sciences, Tehran, Iran.
Source: Health information management : journal of the Health Information Management Association of Australia [Health Inf Manag] 2026 Jan; Vol. 55 (1), pp. 25-42. Date of Electronic Publication: 2025 Aug 23.
Publication Type: Journal Article; Scoping Review
Journal Info: Publisher: SAGE Publications Country of Publication: Australia NLM ID: 9438200 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1833-3575 (Electronic) Linking ISSN: 18333583 NLM ISO Abbreviation: Health Inf Manag Subsets: MEDLINE
Database: MEDLINE Ultimate
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  Data: <searchLink fieldCode="AU" term="%22Mahdian+SZ%22">Mahdian SZ</searchLink>; Department of Health Information Management, School of Health Management and Information Sciences, Iran University of Medical Sciences, Tehran, Iran.<br /><searchLink fieldCode="AU" term="%22Hooman+N%22">Hooman N</searchLink>; Ali Asghar Clinical Research Development Centre (AACRDC), Department of Pediatrics, School of Medicine, Iran University of Medical Sciences, Tehran, Iran.<br /><searchLink fieldCode="AU" term="%22Sheikhtaheri+A%22">Sheikhtaheri A</searchLink>; Health Management and Economics Research Centre, Health Management Research Institute, Iran University of Medical Sciences, Tehran, Iran.; Digital Health and Artificial Intelligence in Medicine Research Unit, School of Health Management and Information Sciences, Iran University of Medical Sciences, Tehran, Iran.
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  Data: <searchLink fieldCode="JN" term="%229438200%22">Health information management : journal of the Health Information Management Association of Australia</searchLink> [Health Inf Manag] 2026 Jan; Vol. 55 (1), pp. 25-42. <i>Date of Electronic Publication: </i>2025 Aug 23.
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  Data: <i>Publisher: </i><searchLink fieldCode="PB" term="%22SAGE+Publications%22">SAGE Publications </searchLink><i>Country of Publication: </i>Australia <i>NLM ID: </i>9438200 <i>Publication Model: </i>Print-Electronic <i>Cited Medium: </i>Internet <i>ISSN: </i>1833-3575 (Electronic) <i>Linking ISSN: </i><searchLink fieldCode="IS" term="%2218333583%22">18333583 </searchLink><i>NLM ISO Abbreviation: </i>Health Inf Manag <i>Subsets: </i>MEDLINE
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        Value: 10.1177/18333583251357802
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      – Code: eng
        Text: English
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      – TitleFull: Rare kidney disease registries: A scoping review on characteristics and lessons learnt.
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              Text: 2026 Jan
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              Y: 2026
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