{"id":52805,"date":"2026-03-12T13:21:39","date_gmt":"2026-03-12T13:21:39","guid":{"rendered":"https:\/\/www.theisn.org\/?page_id=52805"},"modified":"2026-04-17T15:23:37","modified_gmt":"2026-04-17T15:23:37","slug":"isn-i3c-ckdu-toolkit","status":"publish","type":"page","link":"https:\/\/www.theisn.org\/initiatives\/toolkits\/isn-i3c-ckdu-toolkit\/","title":{"rendered":"ISN i3C (CKDu) Toolkit"},"content":{"rendered":"<p>[vc_row][vc_column][vc_column_text]<span data-teams=\"true\">This toolkit provides practical guidance for conducting high-quality, community-centered research on chronic kidney disease of unknown etiology (CKDu).<\/span>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=&#8221;1\/3&#8243;][vc_row_inner content_placement=&#8221;middle&#8221;][vc_column_inner width=&#8221;1\/4&#8243; offset=&#8221;vc_col-xs-3&#8243; css=&#8221;.vc_custom_1773231936451{padding-right: 0px !important;padding-left: 0px !important;}&#8221;][vc_single_image image=&#8221;53164&#8243; img_size=&#8221;80&#215;80&#8243; alignment=&#8221;right&#8221; css=&#8221;.vc_custom_1774542544003{padding-right: 0px !important;padding-left: 0px !important;}&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;3\/4&#8243; offset=&#8221;vc_col-xs-9&#8243;][vc_column_text el_class=&#8221;top-boxes&#8221;]<\/p>\n<div class=\"align-middle\" style=\"text-align: left;\"><a href=\"#objectives\">Objectives of the ISN i3C CKDu Toolkit<\/a><\/div>\n<p>[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][vc_column width=&#8221;1\/3&#8243;][vc_row_inner content_placement=&#8221;middle&#8221;][vc_column_inner width=&#8221;1\/4&#8243; offset=&#8221;vc_col-xs-3&#8243; css=&#8221;.vc_custom_1773231990513{padding-right: 0px !important;padding-left: 0px !important;}&#8221;][vc_single_image image=&#8221;53163&#8243; img_size=&#8221;80&#215;80&#8243; alignment=&#8221;right&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;3\/4&#8243; offset=&#8221;vc_col-xs-9&#8243;][vc_column_text el_class=&#8221;top-boxes&#8221;]<a href=\"#how-to-use\">How to use this toolkit?<\/a>[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][vc_column width=&#8221;1\/3&#8243;][vc_row_inner content_placement=&#8221;middle&#8221;][vc_column_inner width=&#8221;1\/4&#8243; offset=&#8221;vc_col-xs-3&#8243; css=&#8221;.vc_custom_1773232018538{padding-right: 0px !important;padding-left: 0px !important;}&#8221;][vc_single_image image=&#8221;53166&#8243; img_size=&#8221;80&#215;80&#8243; alignment=&#8221;right&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;3\/4&#8243; offset=&#8221;vc_col-xs-9&#8243;][vc_column_text el_class=&#8221;top-boxes&#8221;]<a href=\"#who\">Who is it for?<\/a>[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row css=&#8221;.vc_custom_1774521523195{margin-bottom: 30px !important;}&#8221; el_class=&#8221;top-links&#8221;][vc_column width=&#8221;1\/2&#8243;][vc_row_inner content_placement=&#8221;middle&#8221;][vc_column_inner width=&#8221;1\/4&#8243; offset=&#8221;vc_col-xs-3&#8243; css=&#8221;.vc_custom_1773231936451{padding-right: 0px !important;padding-left: 0px !important;}&#8221;][vc_single_image image=&#8221;53162&#8243; img_size=&#8221;80&#215;80&#8243; alignment=&#8221;right&#8221; css=&#8221;.vc_custom_1774542577584{padding-right: 0px !important;padding-left: 0px !important;}&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;3\/4&#8243; offset=&#8221;vc_col-xs-9&#8243;][vc_column_text el_class=&#8221;top-boxes&#8221;]<\/p>\n<div class=\"align-middle\" style=\"text-align: left;\"><a href=\"#applicability\">Global equity &amp; multi-regional applicability<\/a><\/div>\n<p><a name=\"objectives\"><\/a>[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][vc_column width=&#8221;1\/2&#8243;][vc_row_inner content_placement=&#8221;middle&#8221;][vc_column_inner width=&#8221;1\/4&#8243; offset=&#8221;vc_col-xs-3&#8243; css=&#8221;.vc_custom_1773231990513{padding-right: 0px !important;padding-left: 0px !important;}&#8221;][vc_single_image image=&#8221;53165&#8243; img_size=&#8221;80&#215;80&#8243; alignment=&#8221;right&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;3\/4&#8243; offset=&#8221;vc_col-xs-9&#8243;][vc_column_text el_class=&#8221;top-boxes&#8221;]<a href=\"#stages\">Study stages<\/a>[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row css=&#8221;.vc_custom_1773921369550{margin-bottom: 35px !important;}&#8221;][vc_column][vc_column_text]<\/p>\n<h3>Objectives of the ISN i3C CKDu Toolkit<\/h3>\n<p>The ISN i3C (CKDu) Toolkit aims to equip investigators, clinicians\u2019 community partners, and policymakers with harmonized sets of practical ethnically grounded methods to support high-quality CKDu research across diverse global contexts. Drawing on evidence synthesized and community engagement insights, the toolkit promotes consistent study design, standardized case definitions, and robust exposure and outcome measurements.<\/p>\n<p>A central objective is to strengthen research capacity in CKDu-endemic regions. This involves providing guidance for developing laboratory and pathology infrastructure, adopting validated biomarkers where feasible, and implementing biorepository practices to support multidisciplinary and culturally sensitive community engagement, ensuring that CKDu-affected communities are partners in the research process.<\/p>\n<p>The toolkit supports global data comparability by promoting the minimum dataset recommended by the i3C working group and offering practical templates for field procedures, sample collection, data management, and reporting. By enhancing methodological rigor and consistency, the toolkit seeks to accelerate scientific discovery, facilitate equitable collaboration, and generate actionable evidence for clinical practice, occupational health, and public policy.<br \/>\n<a name=\"how-to-use\"><\/a><br \/>\nThe toolkit integrates research methods with real-world conditions, enabling field teams to conduct rigorous studies that respect and empower communities affected by CKDu.[\/vc_column_text][\/vc_column][\/vc_row][vc_row css=&#8221;.vc_custom_1773921353553{margin-bottom: 35px !important;}&#8221;][vc_column][vc_column_text]<\/p>\n<h3>How to use this toolkit?<\/h3>\n<p>This toolkit provides structured, step-by-step guidance for the design, implementation, analysis, and dissemination of chronic kidney disease of unknown etiology (CKDu) research globally. It consolidates advanced methodologies from the ISN i3C\u2019s principal publications, including:<\/p>\n<ul>\n<li>Epidemiologic, molecular and genetic research methodologies.<\/li>\n<li>Guidance on population-level disease detection and minimum dataset specifications.<\/li>\n<li>Ethical considerations specific to CKDu research.<\/li>\n<li>Best practices for performing kidney biopsies in CKDu-endemic regions.<\/li>\n<li>Challenges and opportunities in the design and implementation of interventional studies.<\/li>\n<li>Frameworks for multicounty prospective cohort design.<\/li>\n<\/ul>\n<p><a name=\"who\"><\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row css=&#8221;.vc_custom_1773921358966{margin-bottom: 35px !important;}&#8221;][vc_column][vc_column_text]<\/p>\n<h3>Who is it for?<\/h3>\n<ul>\n<li>Researchers and clinicians involved with studies on CKDu<\/li>\n<li>Field epidemiology teams and community health professionals<\/li>\n<li>Laboratory scientists, genetics specialists, and pathology collaborators<\/li>\n<li>Public health agencies and policymakers<\/li>\n<li>Non-governmental organizations and occupational or environmental health organizations<\/li>\n<li>Global and regional collaborators operating in CKDu endemic areas<\/li>\n<\/ul>\n<p><a name=\"applicability\"><\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row css=&#8221;.vc_custom_1773921364320{margin-bottom: 35px !important;}&#8221;][vc_column][vc_column_text]<\/p>\n<h3>Global equity &amp; multi-regional applicability<\/h3>\n<p>CKDu affects multiples regions, each with distinct social, environmental, and health system challenges. The purpose of this toolkit is to:<\/p>\n<ul>\n<li>Promote equitable participation among researchers and communities from all regions affected by CKDu.<\/li>\n<li>Support harmonized yet contextually adaptable approaches to exposure assessment, laboratory methodologies, outcome definitions, and community engagement.<\/li>\n<li>Highlight challenges and knowledge gaps identified in i3C publications.<\/li>\n<li>Facilitate the identification of local challenges and resources, including climate, employment types, and health system capacity.<\/li>\n<li>Foster capacity building, equitable authorship practices, and data-sharing models that respect national sovereignty. Ensure methodological feasibility across low-, middle- and high-resource settings prioritizing researchers and communities most affected by CKDu.<\/li>\n<li>Embed ethical priorities, particularly in relation to informed consent, community trust, return of results and kidney biopsy decision-making within vulnerable populations.<\/li>\n<\/ul>\n<p>Through the toolkit, sidebar notes will indicate:<\/p>\n<ul>\n<li>Equity considerations<\/li>\n<li>Region-specific adaptations<\/li>\n<li>Considerations for limited resource settings<\/li>\n<li>Ethical and cultural sensitivities<\/li>\n<li>Minimum dataset requirements<\/li>\n<\/ul>\n<p><a name=\"stages\"><\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row css=&#8221;.vc_custom_1773921364320{margin-bottom: 35px !important;}&#8221;][vc_column][vc_column_text]<\/p>\n<h3>Study stages<\/h3>\n<p>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_row_inner css=&#8221;.vc_custom_1773305129473{margin-bottom: 1px !important;}&#8221;][vc_column_inner el_class=&#8221;box-blue-isn&#8221; width=&#8221;1\/4&#8243; css=&#8221;.vc_custom_1773305230780{margin-bottom: 0px !important;background-image: url(https:\/\/www.theisn.org\/wp-content\/uploads\/2020\/09\/Toolkit-all-pages-banner.jpg?id=8709) !important;}&#8221;][vc_column_text]<\/p>\n<h3><a href=\"https:\/\/www.theisn.org\/?page_id=52844&amp;preview=1&amp;_ppp=29315660f0\">Stage 0<\/a><\/h3>\n<p>Preparation &amp; capacity building[\/vc_column_text][\/vc_column_inner][vc_column_inner el_class=&#8221;box-blue-isn&#8221; width=&#8221;1\/4&#8243; css=&#8221;.vc_custom_1773305244856{margin-bottom: 0px !important;background-image: url(https:\/\/www.theisn.org\/wp-content\/uploads\/2020\/09\/Toolkit-all-pages-banner-1.jpg?id=8710) !important;}&#8221;][vc_column_text]<\/p>\n<h3><a href=\"https:\/\/www.theisn.org\/?page_id=52970&amp;preview=1&amp;_ppp=3f274a735a\">Stage I<\/a><\/h3>\n<p>CKDu research planning and development[\/vc_column_text][\/vc_column_inner][vc_column_inner el_class=&#8221;box-blue-isn&#8221; width=&#8221;1\/4&#8243; css=&#8221;.vc_custom_1773305250026{margin-bottom: 0px !important;background-image: url(https:\/\/www.theisn.org\/wp-content\/uploads\/2020\/09\/Toolkit-all-pages-banner-1.jpg?id=8710) !important;}&#8221;][vc_column_text]<\/p>\n<h3><a href=\"https:\/\/www.theisn.org\/?page_id=52850&amp;preview=1&amp;_ppp=9a3c4936a0\">Stage II<\/a><\/h3>\n<p>Conducting research studies on CKDu[\/vc_column_text][\/vc_column_inner][vc_column_inner el_class=&#8221;box-blue-isn&#8221; width=&#8221;1\/4&#8243; css=&#8221;.vc_custom_1773305255247{margin-bottom: 0px !important;background-image: url(https:\/\/www.theisn.org\/wp-content\/uploads\/2020\/09\/Toolkit-all-pages-banner-1.jpg?id=8710) !important;}&#8221;][vc_column_text]<\/p>\n<h3><a href=\"https:\/\/www.theisn.org\/?page_id=52854&amp;preview=1&amp;_ppp=8117724a95\">Stage III<\/a><\/h3>\n<p>Reporting CKDu study results[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][vc_row_inner css=&#8221;.vc_custom_1773305152189{margin-top: 0px !important;}&#8221;][vc_column_inner el_class=&#8221;box-blue-isn&#8221; width=&#8221;1\/4&#8243; css=&#8221;.vc_custom_1599394037356{background-image: url(https:\/\/www.theisn.org\/wp-content\/uploads\/2020\/09\/Toolkit-all-pages-banner.jpg?id=8709) !important;}&#8221;][vc_column_text]<\/p>\n<h3><a href=\"https:\/\/www.theisn.org\/?page_id=52856&amp;preview=1&amp;_ppp=1010edd590\">Stage IV<\/a><\/h3>\n<p>Research implementation[\/vc_column_text][\/vc_column_inner][vc_column_inner el_class=&#8221;box-blue-isn&#8221; width=&#8221;1\/4&#8243; css=&#8221;.vc_custom_1599394306711{background-image: url(https:\/\/www.theisn.org\/wp-content\/uploads\/2020\/09\/Toolkit-all-pages-banner-1.jpg?id=8710) !important;}&#8221;][vc_column_text]<\/p>\n<h3><a href=\"https:\/\/www.theisn.org\/?page_id=52858&amp;preview=1&amp;_ppp=8f64ae1e5c\">Stage V<\/a><\/h3>\n<p>CKDu research knowledge dissemination[\/vc_column_text][\/vc_column_inner][vc_column_inner el_class=&#8221;box-blue-isn&#8221; width=&#8221;1\/4&#8243; css=&#8221;.vc_custom_1599394317523{background-image: url(https:\/\/www.theisn.org\/wp-content\/uploads\/2020\/09\/Toolkit-all-pages-banner-1.jpg?id=8710) !important;}&#8221;][vc_column_text]<\/p>\n<h3><a href=\"https:\/\/www.theisn.org\/?page_id=52860&amp;preview=1&amp;_ppp=b3cacf35e6\">Stage VI<\/a><\/h3>\n<p>CKDu networking[\/vc_column_text][\/vc_column_inner][vc_column_inner el_class=&#8221;box-blue-isn-&#8221; width=&#8221;1\/4&#8243;][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row][vc_column][vc_tta_accordion c_position=&#8221;right&#8221; active_section=&#8221;&#8221; collapsible_all=&#8221;true&#8221; el_class=&#8221;accordion-isn&#8221;][vc_tta_section title=&#8221;Resources&#8221; tab_id=&#8221;resources&#8221;][vc_column_text]<\/p>\n<ul>\n<li>Anand, S., Caplin, B., Gonzalez-quiroz, M., Schensul, S. L., Bhalla, V., Nanayakkara, N., Fire, A., Levin, A., &amp; Friedman, D. J. (2019). Epidemiology, molecular, and genetic methodologies to evaluate causes of CKDu around the world: report of the Working Group from the ISN International Consortium of Collaborators on CKDu. Kidney International, 6(96), 1254\u20131260. <a href=\"https:\/\/doi.org\/10.1016\/j.kint.2019.09.019\" target=\"_blank\" rel=\"noopener\">https:\/\/doi.org\/10.1016\/j.kint.2019.09.019<\/a><\/li>\n<li>Caplin, B., Yang, C., Anand, S., Levin, A., Madero, M., Saran, R., Jayasinghe, S., De Broe, M., Yeates, K., Tonelli, M., Jakobsson, K., Strani, L., Ruggiero, A., Glaser, J., Martin, E., Pearce, N., &amp; Wijewickrama, E. (2019). The International Society of Nephrology\u2019s International Consortium of Collaborators on Chronic Kidney Disease of Unknown Etiology: report of the working group on approaches to population-level detection strategies and recommendations for a minimum dataset. Kidney International, 1(95), 4\u201310. <a href=\"https:\/\/doi.org\/10.1016\/j.kint.2018.08.019.\" target=\"_blank\" rel=\"noopener\">https:\/\/doi.org\/10.1016\/j.kint.2018.08.019.<\/a><\/li>\n<li>Smyth, B., Glaser, J., Butler-Dawson, J., Nanayakkara, N., Wegman, D. H., Anand, S., &amp; Levin, A. (2023). Challenges and opportunities in interventions for chronic kidney disease of unknown origin ( CKDu ): Report from the International Society of Nephrology Consortium of Collaborators on CKDu. Kidney International, 103(1), 6\u201312. <a href=\"https:\/\/doi.org\/10.1016\/j.kint.2022.10.013\" target=\"_blank\" rel=\"noopener\">https:\/\/doi.org\/10.1016\/j.kint.2022.10.013<\/a>.<\/li>\n<li>Wijewickrama, E., Behera, S., Garcia, P., Avila-Casado, C., Caplin, B., Paolo, V., Courville, K., Friedman, D., Madero, M., Jha, V., Kambham, N., Levin, A., &amp; Anand, S. (2024). Kidney biopsies among persons living in hotspots of CKDu: a position statement from the International Society of Nephrology\u2019s Consortium of Collaborators on CKDu. Kidney International, 3(105), 464\u2013469. <a href=\"https:\/\/doi.org\/10.1016\/j.kint.2023.12.012\" target=\"_blank\" rel=\"noopener\">https:\/\/doi.org\/10.1016\/j.kint.2023.12.012<\/a>.<\/li>\n<\/ul>\n<p>[\/vc_column_text][\/vc_tta_section][vc_tta_section title=&#8221;Acknowledgements&#8221; tab_id=&#8221;acknowledgements&#8221;][vc_column_text]<\/p>\n<ul>\n<li>This toolkit reflects the collaborative work of the ISN International Consortium on CKDu (ISN i3C) and its regional partner, uniting expertise to advance community-engaged research.<\/li>\n<li>We recognize the diverse professional and community leaders who are shaping our understanding and response to CKDu across diverse global regions. As such, we acknowledge our regional scientific partners, field research collaborators, laboratory, pathology and genetics partners, ethics and community engagement advisors, as well as community stakeholders and patient representatives.<\/li>\n<li>We extend our gratitude to the affected communities, whose experiences and input guide our research priorities and actions.<\/li>\n<\/ul>\n<p>[\/vc_column_text][\/vc_tta_section][vc_tta_section title=&#8221;ISN i3C Toolkit developers&#8221; tab_id=&#8221;developers&#8221;][vc_column_text]<\/p>\n<ul>\n<li>Ana Catalina Alvarez-El\u00edas, MD, MSc, PhD.Sc (United States)<\/li>\n<li>Eranga Wijewikrama, MD, PhD (Sri Lanka)<\/li>\n<li>Ben Caplin, MD, PhD (United Kingdom)<\/li>\n<\/ul>\n<p>[\/vc_column_text][\/vc_tta_section][vc_tta_section title=&#8221;ISN i3C Working Group&#8221; tab_id=&#8221;working-group&#8221;][vc_column_text]The i3C Working Group members are listed\u00a0<a href=\"https:\/\/www.theisn.org\/about-isn\/supporting-groups\/research-supporting-groups\/#i3C\">here<\/a>.[\/vc_column_text][\/vc_tta_section][vc_tta_section title=&#8221;Contact and feedback&#8221; tab_id=&#8221;contact&#8221;][vc_column_text]This toolkit is a dynamic resource and will be updated as new evidence becomes available.<\/p>\n<p>Feedback, suggestions and examples from ongoing projects are welcome.<\/p>\n<ul>\n<li>Contact us at <a href=\"mailto:research@theisn.org\">research@theisn.org<\/a><\/li>\n<\/ul>\n<p>[\/vc_column_text][\/vc_tta_section][\/vc_tta_accordion][\/vc_column][\/vc_row]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>[vc_row][vc_column][vc_column_text]This toolkit provides practical guidance for conducting high-quality, community-centered research on chronic kidney disease of unknown etiology (CKDu).[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=&#8221;1\/3&#8243;][vc_row_inner content_placement=&#8221;middle&#8221;][vc_column_inner width=&#8221;1\/4&#8243; offset=&#8221;vc_col-xs-3&#8243; css=&#8221;.vc_custom_1773231936451{padding-right: 0px !important;padding-left: 0px !important;}&#8221;][vc_single_image image=&#8221;53164&#8243; img_size=&#8221;80&#215;80&#8243; alignment=&#8221;right&#8221; css=&#8221;.vc_custom_1774542544003{padding-right: 0px !important;padding-left: 0px !important;}&#8221;][\/vc_column_inner][vc_column_inner width=&#8221;3\/4&#8243; offset=&#8221;vc_col-xs-9&#8243;][vc_column_text el_class=&#8221;top-boxes&#8221;] Objectives of the ISN i3C CKDu Toolkit [\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][vc_column width=&#8221;1\/3&#8243;][vc_row_inner content_placement=&#8221;middle&#8221;][vc_column_inner width=&#8221;1\/4&#8243; offset=&#8221;vc_col-xs-3&#8243; css=&#8221;.vc_custom_1773231990513{padding-right: 0px !important;padding-left: 0px !important;}&#8221;][vc_single_image [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":0,"parent":37555,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-52805","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.theisn.org\/wp-json\/wp\/v2\/pages\/52805"}],"collection":[{"href":"https:\/\/www.theisn.org\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.theisn.org\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.theisn.org\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.theisn.org\/wp-json\/wp\/v2\/comments?post=52805"}],"version-history":[{"count":6,"href":"https:\/\/www.theisn.org\/wp-json\/wp\/v2\/pages\/52805\/revisions"}],"predecessor-version":[{"id":53440,"href":"https:\/\/www.theisn.org\/wp-json\/wp\/v2\/pages\/52805\/revisions\/53440"}],"up":[{"embeddable":true,"href":"https:\/\/www.theisn.org\/wp-json\/wp\/v2\/pages\/37555"}],"wp:attachment":[{"href":"https:\/\/www.theisn.org\/wp-json\/wp\/v2\/media?parent=52805"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}