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Abstract: FR-PO891

Identification of Neglected Kidney Diseases: Results From an International Survey

Session Information

Category: Diversity and Equity in Kidney Health

  • 800 Diversity and Equity in Kidney Health


  • Cheung, Chee Kay, University of Leicester, Leicester, Leicestershire, United Kingdom
  • Moorthy, Monica, International Society of Nephrology, Brussels, Belgium
  • Devuyst, Olivier, Universitat Zurich, Zurich, ZH, Switzerland
  • Ulasi, Ifeoma I., University of Nigeria, Nsukka, Enugu, Nigeria
  • Barratt, Jonathan, University of Leicester, Leicester, Leicestershire, United Kingdom
  • Jha, Vivekanand, The George Institute for Global Health India, New Delhi, Delhi, India

Neglected kidney diseases face similar issues to rare kidney diseases: a lack of awareness amongst healthcare professionals, delays in diagnosis, a lack of available or accessible treatments, and low prioritization for research funding. These entities are not well defined, and include both communicable and non-communicable conditions that affect a broad patient demographic spanning age, gender, ethnicities, and socio-economic groups. Perceptions amongst stakeholder communities of what constitutes a neglected kidney disease are unclear. The aim of this study was to explore views on this topic internationally.


We distributed an online survey to the International Society of Nephrology (ISN) community, that asked respondents to name three neglected kidney diseases, and to specify reasons for their choice. Results from this survey were summarized and grouped according to whether the respondent was from a low- and middle-income country (LMIC) or a high-income country (HIC), according to the Organization for Economic Co-operation and Development (OECD).


There were 310 responses from 84 countries. 223 (71.9%) responses were from a LMIC. The top three neglected diseases identified by respondents from a LMIC were diabetic nephropathy, polycystic kidney disease and chronic kidney disease. In contrast, the top three neglected diseases by respondents from a HIC were Fabry’s disease, IgA nephropathy and polycystic kidney disease. Conditions found primarily in LMIC such as CKDu (Mesoamerican nephropathy), herbal nephropathy or those due to communicable disease were more likely to be included by respondents from those countries, whereas respondents from HIC were more likely to state ultrarare kidney diseases, such as those due to monogenic causes or disorders of the complement system.


Further analysis of the results from this survey will identify what the ISN community consider to be neglected kidney diseases, and the reasons for each choice. Notably, common kidney diseases such as diabetic nephropathy featured frequently in responses from LMIC, which may reflect a lack of access to recently developed therapies. Ongoing work will continue to assess the attitudes of healthcare professionals and the public towards this topic, and help inform the ISN regarding priorities for education, advocacy and research funding.