{"id":96,"date":"2014-12-12T19:45:19","date_gmt":"2014-12-12T19:45:19","guid":{"rendered":"\/pulmonary-insights\/?p=96"},"modified":"2016-10-06T11:04:04","modified_gmt":"2016-10-06T15:04:04","slug":"us-national-registry-for-pulmonary-alveolar-proteinosis-pap-patients-critical-to-success-of-ongoing-research","status":"publish","type":"post","link":"https:\/\/www.uchealth.com\/pulmonary-insights\/us-national-registry-for-pulmonary-alveolar-proteinosis-pap-patients-critical-to-success-of-ongoing-research\/","title":{"rendered":"US National Registry for Pulmonary Alveolar Proteinosis (PAP) Patients Critical to Success of Ongoing Research"},"content":{"rendered":"<p>Successful completion of the Multicenter International Lymphangioleiomyomatosis (LAM) Efficacy and Safety of Sirolimus (MILES) trial was critically dependent on communication and collaboration with the LAM patient community, which was made possible through their advocacy group, the LAM Foundation. \u201cIn preparation for the upcoming treatment trials for PAP, it\u2019s important that we similarly engage the pulmonary alveolar proteinosis (PAP) patient community,\u201d says <a href=\"https:\/\/www.uchealth.com\/physician\/bruce-trapnell\/\" target=\"_blank\">Bruce Trapnell, MD<\/a>, Professor of Medicine and Pediatrics. \u201cClinical investigators and patients with rare diseases need a conduit to communicate about research results and clinical studies, to answer patient questions, and provide patients a \u2018seat at the table\u2019 in planning future research studies. To this end, we are reaching out to patients and pulmonologists alike online and will be sending letters and emails to every academic center in the country and all the patients in whom we have diagnosed PAP through our prior clinical research studies.\u201d<\/p>\n<p>Interested patients can find out more and receive further information about the clinical studies for PAP and other rare lung diseases through the Contact Registry of the National Institutes of Health (NIH) Rare Diseases Clinical Research Network accessible via the internet at <a href=\"https:\/\/www.rarediseasesnetwork.org\/registry\/\" target=\"_blank\">https:\/\/www.rarediseasesnetwork.org\/registry\/<\/a>.<\/p>\n<p>\u201cThe involvement of patients and their doctors is important to the successful development of novel diagnostics and therapies for patients with rare lung diseases,\u201d says Trapnell.<\/p>\n<p>To learn more or get involved, contact the Rare Lung Diseases Consortium Program Coordinator at 513-636-6361.<\/p>\n<p><a href=\"https:\/\/www.uchealth.com\/physician\/bruce-trapnell\/\" target=\"_blank\"><strong><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-full wp-image-102\" src=\"\/wp-content\/uploads\/sites\/39\/2014\/12\/Bruce-Trapnell-MS-MD.jpeg\" alt=\"Bruce Trapnell, MS, MD\" width=\"132\" height=\"200\" \/>Bruce Trapnell, MS, MD<\/strong><\/a><br \/>\nProfessor of Medicine and Pediatrics<br \/>\nUniversity of Cincinnati Medical Center<br \/>\nMedical School: University of Maryland<br \/>\n513-636-6956<br \/>\n<a href=\"mailto:Bruce.Trapnell@cchmc.org\">Bruce.Trapnell@cchmc.org<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Successful completion of the Multicenter International Lymphangioleiomyomatosis (LAM) Efficacy and Safety of Sirolimus (MILES) trial was critically dependent on communication and collaboration with the LAM patient community, which was made possible through their advocacy group, the LAM Foundation.<\/p>\n","protected":false},"author":85,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4],"tags":[8,5,38,11,73,74],"class_list":["post-96","post","type-post","status-publish","format-standard","hentry","category-news","tag-lam","tag-lymphangioleiomyomatosis","tag-miles-trial","tag-pap","tag-pulmonary-alveolar-proteinosis","tag-rare-lung-diseases"],"aioseo_notices":[],"_links":{"self":[{"href":"https:\/\/www.uchealth.com\/pulmonary-insights\/wp-json\/wp\/v2\/posts\/96","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.uchealth.com\/pulmonary-insights\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.uchealth.com\/pulmonary-insights\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.uchealth.com\/pulmonary-insights\/wp-json\/wp\/v2\/users\/85"}],"replies":[{"embeddable":true,"href":"https:\/\/www.uchealth.com\/pulmonary-insights\/wp-json\/wp\/v2\/comments?post=96"}],"version-history":[{"count":7,"href":"https:\/\/www.uchealth.com\/pulmonary-insights\/wp-json\/wp\/v2\/posts\/96\/revisions"}],"predecessor-version":[{"id":149,"href":"https:\/\/www.uchealth.com\/pulmonary-insights\/wp-json\/wp\/v2\/posts\/96\/revisions\/149"}],"wp:attachment":[{"href":"https:\/\/www.uchealth.com\/pulmonary-insights\/wp-json\/wp\/v2\/media?parent=96"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.uchealth.com\/pulmonary-insights\/wp-json\/wp\/v2\/categories?post=96"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.uchealth.com\/pulmonary-insights\/wp-json\/wp\/v2\/tags?post=96"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}