{"id":1678,"date":"2025-05-06T11:45:12","date_gmt":"2025-05-06T10:45:12","guid":{"rendered":"https:\/\/sites.manchester.ac.uk\/alport-hub\/?page_id=1678"},"modified":"2025-05-08T10:17:23","modified_gmt":"2025-05-08T09:17:23","slug":"patients","status":"publish","type":"page","link":"https:\/\/sites.manchester.ac.uk\/alport-hub\/work-with-us\/patients\/","title":{"rendered":"Patients"},"content":{"rendered":"<p>[et_pb_section bb_built=&#8221;1&#8243; admin_label=&#8221;section&#8221; fullwidth=&#8221;on&#8221; next_background_color=&#8221;#000000&#8243; global_module=&#8221;322&#8243;][et_pb_fullwidth_menu global_parent=&#8221;322&#8243; _builder_version=&#8221;3.0.106&#8243; menu_id=&#8221;7&#8243; submenu_direction=&#8221;downwards&#8221; fullwidth_menu=&#8221;off&#8221; background_layout=&#8221;dark&#8221; module_class=&#8221;main-navigation&#8221; \/][\/et_pb_section][et_pb_section bb_built=&#8221;1&#8243; fullwidth=&#8221;off&#8221; specialty=&#8221;off&#8221; transparent_background=&#8221;off&#8221; allow_player_pause=&#8221;off&#8221; inner_shadow=&#8221;off&#8221; parallax=&#8221;off&#8221; parallax_method=&#8221;on&#8221; make_fullwidth=&#8221;off&#8221; use_custom_width=&#8221;off&#8221; width_unit=&#8221;on&#8221; make_equal=&#8221;off&#8221; use_custom_gutter=&#8221;off&#8221; custom_padding=&#8221;0px||0px|&#8221; custom_css_main_element=&#8221;padding-top:0px&#8221; module_class=&#8221;header-image-section&#8221; prev_background_color=&#8221;#ffffff&#8221; next_background_color=&#8221;#ffffff&#8221;][et_pb_row allow_player_pause=&#8221;off&#8221; parallax=&#8221;off&#8221; parallax_method=&#8221;on&#8221; parallax_1=&#8221;off&#8221; parallax_method_1=&#8221;off&#8221; make_fullwidth=&#8221;off&#8221; use_custom_width=&#8221;off&#8221; width_unit=&#8221;on&#8221; use_custom_gutter=&#8221;off&#8221; make_equal=&#8221;off&#8221; custom_margin=&#8221;||0px|&#8221; custom_padding=&#8221;||0px|&#8221; module_class=&#8221;header-image&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; background_size=&#8221;initial&#8221;][et_pb_column type=&#8221;4_4&#8243;][et_pb_image src=&#8221;https:\/\/sites.manchester.ac.uk\/alport-hub\/wp-content\/uploads\/sites\/416\/2025\/05\/For-patients.png&#8221; show_in_lightbox=&#8221;off&#8221; url_new_window=&#8221;off&#8221; use_overlay=&#8221;off&#8221; align=&#8221;left&#8221; always_center_on_mobile=&#8221;on&#8221; use_border_color=&#8221;off&#8221; force_fullwidth=&#8221;off&#8221; custom_margin=&#8221;0px|||&#8221; animation_direction=&#8221;left&#8221; show_bottom_space=&#8221;off&#8221; border_color_all=&#8221;#ffffff&#8221; _builder_version=&#8221;3.17.6&#8243; \/][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section bb_built=&#8221;1&#8243; fullwidth=&#8221;off&#8221; specialty=&#8221;off&#8221; transparent_background=&#8221;off&#8221; allow_player_pause=&#8221;off&#8221; inner_shadow=&#8221;off&#8221; parallax=&#8221;off&#8221; parallax_method=&#8221;on&#8221; make_fullwidth=&#8221;off&#8221; use_custom_width=&#8221;off&#8221; width_unit=&#8221;on&#8221; make_equal=&#8221;off&#8221; use_custom_gutter=&#8221;off&#8221; custom_padding=&#8221;||0px|&#8221; prev_background_color=&#8221;#ffffff&#8221; next_background_color=&#8221;#ffffff&#8221;][et_pb_row allow_player_pause=&#8221;off&#8221; parallax=&#8221;off&#8221; parallax_method=&#8221;on&#8221; parallax_1=&#8221;off&#8221; parallax_method_1=&#8221;off&#8221; make_fullwidth=&#8221;off&#8221; use_custom_width=&#8221;off&#8221; width_unit=&#8221;on&#8221; use_custom_gutter=&#8221;off&#8221; make_equal=&#8221;off&#8221; custom_margin=&#8221;||0px|&#8221; custom_padding=&#8221;||0px|&#8221; module_class=&#8221;breadcrumbs-row&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; background_size=&#8221;initial&#8221;][et_pb_column type=&#8221;4_4&#8243;][et_pb_text admin_label=&#8221;Breadcrumbs (do not remove)&#8221; background_layout=&#8221;light&#8221; text_orientation=&#8221;left&#8221; use_border_color=&#8221;off&#8221; border_color=&#8221;#ffffff&#8221; border_style=&#8221;solid&#8221; module_class=&#8221;breadcrumbs&#8221; custom_css_main_element=&#8221;border-bottom: 1px solid #ececed;&#8221; module_alignment=&#8221;left&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; background_size=&#8221;initial&#8221;]<\/p>\n<span><span><a href=\"https:\/\/sites.manchester.ac.uk\/alport-hub\/\">Alport Research Hub<\/a><\/span><\/span>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section bb_built=&#8221;1&#8243; fullwidth=&#8221;off&#8221; specialty=&#8221;on&#8221; transparent_background=&#8221;off&#8221; allow_player_pause=&#8221;off&#8221; inner_shadow=&#8221;off&#8221; parallax=&#8221;off&#8221; parallax_method=&#8221;on&#8221; parallax_1=&#8221;off&#8221; parallax_method_1=&#8221;off&#8221; parallax_2=&#8221;off&#8221; parallax_method_2=&#8221;off&#8221; make_fullwidth=&#8221;off&#8221; use_custom_width=&#8221;off&#8221; width_unit=&#8221;on&#8221; make_equal=&#8221;off&#8221; use_custom_gutter=&#8221;on&#8221; gutter_width=&#8221;2&#8243; prev_background_color=&#8221;#ffffff&#8221; next_background_color=&#8221;#1d1d1d&#8221;][et_pb_column type=&#8221;1_3&#8243;][et_pb_sidebar admin_label=&#8221;Left Nav Sidebar&#8221; area=&#8221;et_pb_widget_area_1&#8243; orientation=&#8221;left&#8221; remove_border=&#8221;on&#8221; background_layout=&#8221;light&#8221; module_id=&#8221;left-nav-menu&#8221; show_border=&#8221;off&#8221; \/][\/et_pb_column][et_pb_column type=&#8221;2_3&#8243; specialty_columns=&#8221;2&#8243;][et_pb_row_inner admin_label=&#8221;Row&#8221;][et_pb_column_inner type=&#8221;4_4&#8243; saved_specialty_column_type=&#8221;2_3&#8243;][et_pb_text admin_label=&#8221;Text Patients&#8221; background_layout=&#8221;light&#8221; text_orientation=&#8221;left&#8221; use_border_color=&#8221;off&#8221; module_alignment=&#8221;left&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; background_size=&#8221;initial&#8221; _builder_version=&#8221;3.17.6&#8243;]<\/p>\n<h1>Patients<\/h1>\n<p class=\"subHeading\" style=\"color: #004e72\">The patient voice is at the centre of everything at <a href=\"https:\/\/www.kidneyresearchuk.org\/\">Kidney Research UK<\/a> and Alport UK.<\/p>\n<p>Patients are members on the strategic advisory board for the Stoneygate and Kidney Research UK Alport Research Hub and will be involved in all decision making for future hub projects. If you are a patient who would like to get involved in research, please visit<a href=\"https:\/\/www.kidneyresearchuk.org\/\">\u202fKidney Research UK<\/a>\u202for email\u202f<a href=\"mailto:patients@kidneyresearchuk.org\">Patients@kidneyresearchuk.org<\/a>.\u202f\u202f\u202f<\/p>\n<p>[\/et_pb_text][et_pb_text admin_label=&#8221;Text Jump links&#8221; _builder_version=&#8221;3.17.6&#8243;]<\/p>\n<p style=\"font-size: 1.2em;font-weight: 600\">On this page:<\/p>\n<ul>\n<li><a href=\"#radar\">RaDaR and clinical trials<\/a><\/li>\n<li><a href=\"#pat\">Patient support <\/a><\/li>\n<\/ul>\n<p>[\/et_pb_text][et_pb_divider _builder_version=&#8221;3.17.6&#8243; \/][et_pb_text admin_label=&#8221;Text RADAR&#8221; _builder_version=&#8221;3.17.6&#8243;]<\/p>\n<h2 id=\"radar\">RaDaR and clinical trials<\/h2>\n<p><a href=\"https:\/\/www.ukkidney.org\/rare-renal\/about\">RaDaR<\/a>\u202fis a national registry which collects data on kidney conditions which are classed as rare. The aim of the registry is to help improve our knowledge and understanding of rare kidney conditions, such as Alport syndrome, and to ultimately help others through research.<\/p>\n<h3>How we collect data\u00a0<\/h3>\n<p>The registry uses data that is collected by your hospital team as part of your routine appointments, and other national reporting systems where applicable. Nothing else is required from you or your child other than your consent to participate.\u00a0\u00a0<\/p>\n<h3>Access to the data\u00a0<\/h3>\n<p>Anyone wishing to use the information collected in RaDaR needs to go through an application process, and if agreed, the information shared is fully anonymised. This means that no personal data is shared with the researchers.\u00a0<\/p>\n<h3>How to get involved\u00a0<\/h3>\n<p>If you are interested in getting some more information about RaDaR and potentially contributing to the registry please contact <a href=\"mailto:radar@ukkidney.org\">radar@ukkidney.org<\/a> providing the details of the hospital site where you are currently treated.\u00a0<\/p>\n<h3>Clinical trials\u00a0<\/h3>\n<p>As part of the Hub\u2019s objectives to advance treatments for Alport syndrome we facilitate and support new clinical trials at local hospital sites. Our own Hub Director Prof. Rachel Lennon is the Lead Investigator on several of these trials.\u00a0<\/p>\n<p>Current and recent examples of these trials are as follows:\u00a0<\/p>\n<ul>\n<li>A Phase 2a randomised study of Setanaxib in patients aged 12-50 with Alport syndrome. Sponsored by Calliditas Therapeutics. This study recently closed to recruitment and final participants will complete the trial in the summer. The next phase is currently being planned.\u00a0<\/li>\n<li>A Phase 2 open-label study of Sparsentan in children and adolescents with selected proteinuric glomerular diseases. Sponsored by Travere Therapeutics. This trial is currently open to recruitment.\u00a0<\/li>\n<li>A Phase 3 randomised study of Finerenone in children 6 months to 18 years of age with CKD and proteinuria. Sponsored by Bayer. This study is currently recruiting and has an open label extension for participants who complete the randomised trial.\u00a0\u00a0\u00a0<\/li>\n<li>A Phase 2 open-label study of an investigational drug \u2013 R3R01 \u2013 in patients aged 12+ with Alport syndrome and FSGS. Sponsored by River 3 Renal Corp. This study has recently closed to recruitment in the UK.\u00a0<\/li>\n<\/ul>\n<p>For more information on clinical trials please visit <a href=\"https:\/\/clinicaltrials.gov\/\">clinicaltrials.gov<\/a>.<\/p>\n<p>[\/et_pb_text][et_pb_text admin_label=&#8221;Back to top&#8221; _builder_version=&#8221;3.17.6&#8243;]<\/p>\n<p>&nbsp;<\/p>\n<p><a href=\"#top\">&lt; Back to top<\/a><\/p>\n<p>&nbsp;<\/p>\n<p>[\/et_pb_text][et_pb_divider _builder_version=&#8221;3.17.6&#8243; \/][et_pb_text admin_label=&#8221;Text Patient support&#8221; _builder_version=&#8221;3.17.6&#8243;]<\/p>\n<h2 id=\"pat\">Patient support<\/h2>\n<p>Here are some links to organisations that can offer support to patients, carers and families:<\/p>\n<h3>Alport UK<\/h3>\n<p><img loading=\"lazy\" decoding=\"async\" class=\" wp-image-1684 alignleft\" src=\"https:\/\/sites.manchester.ac.uk\/alport-hub\/wp-content\/uploads\/sites\/416\/2025\/05\/Alport-UK-300x226.jpg\" alt=\"ogo of the patient-led Alport charity Alport UK\" width=\"250\" height=\"188\" srcset=\"https:\/\/sites.manchester.ac.uk\/alport-hub\/wp-content\/uploads\/sites\/416\/2025\/05\/Alport-UK-300x226.jpg 300w, https:\/\/sites.manchester.ac.uk\/alport-hub\/wp-content\/uploads\/sites\/416\/2025\/05\/Alport-UK-150x113.jpg 150w, https:\/\/sites.manchester.ac.uk\/alport-hub\/wp-content\/uploads\/sites\/416\/2025\/05\/Alport-UK-250x188.jpg 250w, https:\/\/sites.manchester.ac.uk\/alport-hub\/wp-content\/uploads\/sites\/416\/2025\/05\/Alport-UK-350x264.jpg 350w, https:\/\/sites.manchester.ac.uk\/alport-hub\/wp-content\/uploads\/sites\/416\/2025\/05\/Alport-UK.jpg 353w\" sizes=\"(max-width: 250px) 100vw, 250px\" \/><a href=\"http:\/\/www.alportuk.org\/\">Alport UK<\/a> is a patient-led organisation dedicated to empowering individuals and families living with Alport syndrome to enjoy the best possible quality of life.<\/p>\n<p>Drawing on our continuous learning and collaboration with individuals, families and the scientific community, Alport UK aims to facilitate a support and information network for those affected by Alport syndrome.<\/p>\n<p>[\/et_pb_text][et_pb_text admin_label=&#8221;Back to top&#8221; _builder_version=&#8221;3.17.6&#8243;]<\/p>\n<p>&nbsp;<\/p>\n<p><a href=\"#top\">&lt; Back to top<\/a><\/p>\n<p>&nbsp;<\/p>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][\/et_pb_column][\/et_pb_section][et_pb_section bb_built=&#8221;1&#8243; admin_label=&#8221;Connect Title&#8221; custom_padding=&#8221;0px||0px|&#8221; _builder_version=&#8221;3.0.90&#8243; background_color=&#8221;#1d1d1d&#8221; module_class=&#8221;footer-section&#8221; prev_background_color=&#8221;#ffffff&#8221; global_module=&#8221;380&#8243;][et_pb_row admin_label=&#8221;row&#8221; global_parent=&#8221;380&#8243; locked=&#8221;off&#8221; allow_player_pause=&#8221;off&#8221; parallax=&#8221;off&#8221; parallax_method=&#8221;on&#8221; parallax_1=&#8221;off&#8221; parallax_method_1=&#8221;off&#8221; parallax_2=&#8221;off&#8221; parallax_method_2=&#8221;off&#8221; parallax_3=&#8221;off&#8221; parallax_method_3=&#8221;off&#8221; make_fullwidth=&#8221;off&#8221; use_custom_width=&#8221;off&#8221; width_unit=&#8221;on&#8221; use_custom_gutter=&#8221;off&#8221; make_equal=&#8221;off&#8221; module_id=&#8221;footer-row&#8221; _builder_version=&#8221;3.0.89&#8243;][et_pb_column type=&#8221;1_3&#8243;][et_pb_text admin_label=&#8221;Contact Us Title&#8221; global_parent=&#8221;380&#8243; background_layout=&#8221;dark&#8221; text_text_color=&#8221;#ffffff&#8221; parent_locked=&#8221;off&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; background_size=&#8221;initial&#8221;]<\/p>\n<h4>Contact Us<\/h4>\n<p>[\/et_pb_text][et_pb_text admin_label=&#8221;Contact Us&#8221; global_parent=&#8221;380&#8243; text_text_color=&#8221;#aaaaaa&#8221; parent_locked=&#8221;off&#8221; background_layout=&#8221;light&#8221; text_orientation=&#8221;left&#8221; use_border_color=&#8221;off&#8221; border_color=&#8221;#ffffff&#8221; border_style=&#8221;solid&#8221; module_class=&#8221;contact-us&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; background_size=&#8221;initial&#8221;]<\/p>\n<p>+44 (0) 161 306 6000<\/p>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_3&#8243;][et_pb_text admin_label=&#8221;Find Us Title&#8221; global_parent=&#8221;380&#8243; background_layout=&#8221;dark&#8221; text_text_color=&#8221;#ffffff&#8221; parent_locked=&#8221;off&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; background_size=&#8221;initial&#8221;]<\/p>\n<h4>Find Us<\/h4>\n<p>[\/et_pb_text][et_pb_text admin_label=&#8221;Address&#8221; global_parent=&#8221;380&#8243; background_layout=&#8221;dark&#8221; text_orientation=&#8221;left&#8221; use_border_color=&#8221;off&#8221; border_color=&#8221;#ffffff&#8221; border_style=&#8221;solid&#8221; module_id=&#8221;address&#8221; parent_locked=&#8221;off&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; background_size=&#8221;initial&#8221;]<\/p>\n<p><a href=\"http:\/\/www.manchester.ac.uk\/discover\/maps\/interactive-map\/\">The University of Manchester<br \/>Oxford Rd<br \/>Manchester<br \/>M13 9PL<br \/>UK<\/a><\/p>\n<p>[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_3&#8243;][et_pb_text admin_label=&#8221;Connect Title&#8221; global_parent=&#8221;380&#8243; background_layout=&#8221;dark&#8221; text_text_color=&#8221;#ffffff&#8221; parent_locked=&#8221;off&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; background_size=&#8221;initial&#8221;]<\/p>\n<h4>Connect With Us<\/h4>\n<p>[\/et_pb_text][et_pb_code admin_label=&#8221;Social Media&#8221; global_parent=&#8221;380&#8243; parent_locked=&#8221;off&#8221; _builder_version=&#8221;3.17.6&#8243;]<\/p>\n<ul class=\"inlineList footer-socialIcons\"><!-- [et_pb_line_break_holder] --><\/p>\n<li><!-- [et_pb_line_break_holder] --> <a href=\"https:\/\/twitter.com\/lennon_lab\"><!-- [et_pb_line_break_holder] --> <img loading=\"lazy\" decoding=\"async\" src=\"\/\/assets.manchester.ac.uk\/phase1\/templates\/images\/icon-twitter-50.png\" alt=\"Twitter page for the Lennon Lab\" width=\"40\" height=\"40\" \/><!-- [et_pb_line_break_holder] --> <\/a><!-- [et_pb_line_break_holder] --><\/li>\n<p><!-- [et_pb_line_break_holder] --><\/ul>\n<p>[\/et_pb_code][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p><span><span><a href=\"https:\/\/sites.manchester.ac.uk\/alport-hub\/\">Alport Research Hub<\/a><\/span><\/span> Patients The patient voice is at the centre of everything at Kidney Research UK and Alport UK. Patients are members on the strategic advisory board for the Stoneygate and Kidney Research UK Alport Research Hub and will be involved in all decision making for future hub projects. If you are a patient who would [&hellip;]<\/p>\n","protected":false},"author":12,"featured_media":0,"parent":1627,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","_exactmetrics_skip_tracking":false,"footnotes":""},"class_list":["post-1678","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/sites.manchester.ac.uk\/alport-hub\/wp-json\/wp\/v2\/pages\/1678","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/sites.manchester.ac.uk\/alport-hub\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/sites.manchester.ac.uk\/alport-hub\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/sites.manchester.ac.uk\/alport-hub\/wp-json\/wp\/v2\/users\/12"}],"replies":[{"embeddable":true,"href":"https:\/\/sites.manchester.ac.uk\/alport-hub\/wp-json\/wp\/v2\/comments?post=1678"}],"version-history":[{"count":10,"href":"https:\/\/sites.manchester.ac.uk\/alport-hub\/wp-json\/wp\/v2\/pages\/1678\/revisions"}],"predecessor-version":[{"id":1736,"href":"https:\/\/sites.manchester.ac.uk\/alport-hub\/wp-json\/wp\/v2\/pages\/1678\/revisions\/1736"}],"up":[{"embeddable":true,"href":"https:\/\/sites.manchester.ac.uk\/alport-hub\/wp-json\/wp\/v2\/pages\/1627"}],"wp:attachment":[{"href":"https:\/\/sites.manchester.ac.uk\/alport-hub\/wp-json\/wp\/v2\/media?parent=1678"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}