{"id":8263,"date":"2025-12-10T15:14:12","date_gmt":"2025-12-10T20:14:12","guid":{"rendered":"https:\/\/statepi.jhsph.edu\/ckid\/?page_id=8263"},"modified":"2026-01-21T12:17:16","modified_gmt":"2026-01-21T17:17:16","slug":"ckid-participant-and-family-council-pfc","status":"publish","type":"page","link":"https:\/\/statepi.jhsph.edu\/ckid\/coordinator-resources\/ckid-participant-and-family-council-pfc\/","title":{"rendered":"CKiD Participant and Family Council (PFC)"},"content":{"rendered":"\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-kgjvy2k5-2426bfba26fee0f51ef1333169c8568d\">\n.flex_column.av-kgjvy2k5-2426bfba26fee0f51ef1333169c8568d{\nborder-width:2px;\nborder-style:none;\nborder-radius:0px 0px 0px 0px;\npadding:10px 10px 10px 10px;\n}\n<\/style>\n<div  class='flex_column av-kgjvy2k5-2426bfba26fee0f51ef1333169c8568d av_one_full  avia-builder-el-0  el_before_av_one_full  avia-builder-el-first  first flex_column_div  '     ><section  class='av_textblock_section av-kgjqiick-f4aaabf4d907336fdb439c7e198a9396 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock'  itemprop=\"text\" ><h1 style=\"text-align: center;\"><strong>Join the CKiD Participant and Family Council (PFC)<\/strong><\/h1>\n<\/div><\/section><\/div>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_one_full-6a52d294aecab252ee76f8bc7761de13\">\n.flex_column.av-av_one_full-6a52d294aecab252ee76f8bc7761de13{\nborder-width:2px;\nborder-style:none;\nborder-radius:0px 0px 0px 0px;\npadding:10px 10px 10px 10px;\n}\n<\/style>\n<div  class='flex_column av-av_one_full-6a52d294aecab252ee76f8bc7761de13 av_one_full  avia-builder-el-2  el_after_av_one_full  el_before_av_layout_row  avia-builder-el-last  first flex_column_div  column-top-margin'     ><section  class='av_textblock_section av-mkoaa9vo-d76725f3d5a826053d804050e37acdf0 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/CreativeWork\" ><div class='avia_textblock'  itemprop=\"text\" ><h3><strong>What is the Participant and Family Council?<\/strong><\/h3>\n<p>The CKiD Study has a Participant and Family Council (PFC) made up of doctors, ethics experts, and about 20 CKiD participants and parents\/guardians. We&#8217;re looking for more members to join!<\/p>\n<p>The council talks about and provides input on important topics related to how the CKiD Study works. For example, one topic includes whether or not to share certain information, like genetic results, with participants and families.<\/p>\n<p>No personal health information is documented within the group. Members can share their thoughts or personal experiences if they feel comfortable.<\/p>\n<h3><strong>Meeting Schedule &amp; Participation<\/strong><\/h3>\n<ul>\n<li>Most PFC meetings will be held via video conference.<\/li>\n<li>Meetings occur every two months and last approximately 1 hour.<\/li>\n<li>You may also be invited to attend the annual CKiD meeting with study coordinators and Primary Investigators (study doctors).<\/li>\n<li>If you attend the annual meeting, the CKiD Study will pay for your transportation, lodging, food, and travel.<\/li>\n<\/ul>\n<h3><strong>Your Role &amp; Contribution<\/strong><\/h3>\n<p>Your experiences as a participant or family member are<em>\u00a0extremely<\/em> valuable and very important. You don&#8217;t need any medical background, just your thoughts and ideas. By joining the PFC, you&#8217;ll help guide decision about how the study works and what we learn.<\/p>\n<p><span class=\"TextRun SCXW261920873 BCX8\" lang=\"EN-US\" xml:lang=\"EN-US\" data-contrast=\"auto\"><span class=\"NormalTextRun SCXW261920873 BCX8\">You must be 18 years of age or the parent\/guardian of a participant to join. <\/span><\/span><span class=\"EOP SCXW261920873 BCX8\" data-ccp-props=\"{\">\u00a0<\/span><\/p>\n<h3><strong>Voluntary Participation<\/strong><\/h3>\n<p>Joining the PFC is completely voluntary. Your medical care and participation in the CKiD Study will not be affected if you choose not to join. There is no penalty or loss of benefits if you decide not to participate, and you may leave the PFC at any time.<\/p>\n<h3><strong>Interested in Joining?<\/strong><\/h3>\n<p>Joining is easy! If you are interested, please contact Cozumel Pruette, MD at csouthe1@jhmi.edu.<\/p>\n<\/div><\/section><\/div><\/div><\/div><\/div><!-- close content main div --><\/div><\/div><div id='av-layout-grid-1'  class='av-layout-grid-container av-h1gy8-1-43f04b4317663c4bc89ccd5488e6ff3e entry-content-wrapper main_color av-flex-cells  avia-builder-el-4  el_after_av_one_full  avia-builder-el-last  grid-row-not-first  container_wrap sidebar_right'  >\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-kgk2zbmp-1c2ff3f2910b3a905c32742677167193\">\n.flex_cell.av-kgk2zbmp-1c2ff3f2910b3a905c32742677167193{\nvertical-align:top;\n}\n.responsive #top #wrap_all .flex_cell.av-kgk2zbmp-1c2ff3f2910b3a905c32742677167193{\npadding:0px 200px 30px 30px !important;\n}\n<\/style>\n<div class='flex_cell av-kgk2zbmp-1c2ff3f2910b3a905c32742677167193 av-gridrow-cell av_one_full no_margin  avia-builder-el-5  avia-builder-el-no-sibling  content-align-top'  ><div class='flex_cell_inner'><\/div><\/div>\n<\/div><\/p>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":6,"featured_media":0,"parent":25,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"page_page-category":[],"page_page-tag":[],"class_list":["post-8263","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/pages\/8263","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/users\/6"}],"replies":[{"embeddable":true,"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/comments?post=8263"}],"version-history":[{"count":18,"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/pages\/8263\/revisions"}],"predecessor-version":[{"id":8319,"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/pages\/8263\/revisions\/8319"}],"up":[{"embeddable":true,"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/pages\/25"}],"wp:attachment":[{"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/media?parent=8263"}],"wp:term":[{"taxonomy":"page_page-category","embeddable":true,"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/page_page-category?post=8263"},{"taxonomy":"page_page-tag","embeddable":true,"href":"https:\/\/statepi.jhsph.edu\/ckid\/wp-json\/wp\/v2\/page_page-tag?post=8263"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}