{"id":13,"date":"2022-04-22T15:59:05","date_gmt":"2022-04-22T15:59:05","guid":{"rendered":"https:\/\/purpose.skybox2.com\/?page_id=13"},"modified":"2024-07-25T17:22:51","modified_gmt":"2024-07-25T17:22:51","slug":"home","status":"publish","type":"page","link":"https:\/\/purposebiobank.org\/","title":{"rendered":"Home"},"content":{"rendered":"\t\t
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\u201cWe don\u2019t have all the answers, but we have purpose\u2014and having purpose changes everything.\u201d<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Nancy Linn<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Director \/ Chair, Relapsing Polychondritis Foundation<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Erin Faight, BS, Principal Investigator<\/em><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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What is Relapsing Polychondritis (RP)?<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Relapsing Polychondritis (RP) is a severe chronic autoimmune disease in which cartilage throughout the body becomes inflamed and breaks down over time. This potentially fatal disease can affect any part of the body where cartilage is present, including the ears, nose, airways, joints, eyes, skin, heart valves, and brain.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t

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What is PURPOSE Biobank?<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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\n\t\t\t\t\t\t\t\t\tA biobank is an organized collection of biological samples (like blood) and medical information that\u00a0serves as a library for scientific investigation. The PURPOSE (Patients\u2019 Universal Relapsing Polychondritis\u00a0Open Specimen Endeavor) Biobank will create a hub of RP samples and data that scientists throughout\u00a0the country, and eventually the world, can apply to use for their RP research. This biobank will employ\u00a0state-of-the-art technology to optimally preserve these precious resources.\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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Why PURPOSE Biobank?<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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\n\t\t\t\t\t\t\t\t\tDue to the rarity of this disease, it is highly challenging and unusual for any single research institution to locally collect enough samples from their patients to make important RP-related discoveries.\u00a0That\u2019s why PURPOSE Biobank is the first and\u00a0only of its kind\u2014an unprecedented initiative that collects samples from participants wherever they are.\u00a0Once PURPOSE has collected a critical mass of information, scientists will be able to apply for access to\u00a0these data and samples, conducting research that has the potential to advance the diagnosis and\u00a0treatment of RP.\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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What is the impact of PURPOSE Biobank?<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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\n\t\t\t\t\t\t\t\t\tThe PURPOSE Biobank is a major effort to discover improved diagnostic tests and treatments for\u00a0patients living with RP.\n

\nThe PURPOSE Biobank also has the potential to deepen the current understanding not only of RP, but of\u00a0other autoimmune diseases as well. There are over 100 immune-mediated conditions, and many of\u00a0these diseases share underlying causes, genetic patterns, and may develop in similar ways. genetic and\u00a0pathogenic mechanisms. If we can uncover answers for RP, these discoveries may have a ripple effect\u00a0across the spectrum of autoimmunity.\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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\n\t\t\t\t\t\tPURPOSE is the first direct-to- patient research initiative to advance the study of RP.\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t

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\n\t\t\t\t\t\tA participant never needs to leave their home to participate in PURPOSE and there will be no cost to participants or their insurance providers. \t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t

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\n\t\t\t\t\t\t\n\t\t\t\t\t\t\tExtended Impact\t\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/h3>\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t

\n\t\t\t\t\t\tAutoimmune diseases often share genetic and pathogenic mechanisms. Medical advancements for one can have an impact on others.\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Participating is easy.<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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\"\"<\/figure>

Check if you are eligible:<\/h4>

  • Do you have a diagnosis or suspected diagnosis of Relapsing Polychondritis (RP)?<\/li>\n
  • Are you age 18-90?<\/li>\n
  • If so, email PURPOSE@ahn.org<\/a> to learn more or to volunteer to participate.<\/li><\/p>\n<\/p><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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    We will send you instructions via email to schedule a video visit with a research team member to discuss the study and learn more about participation. If you decide to join PURPOSE, participation may include collection of medical information and blood samples.<\/h4><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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    We will send you a study blood collection kit in the mail and will work with you to schedule a blood draw at a time and place that is convenient for you.<\/h4><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t
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    Nicole Wilson, MS, CCRC, Bioinformatics Lead<\/em><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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    Michael Linn, Director\/Vice Chair, RP Foundation, Susan Manzi, MD, MPH, and Joseph Ahearn, MD<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t

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    Meet Our Principal Investigator<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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    Joseph Ahearn, MD <\/h4>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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    Dr. Ahearn is Chair of the Allegheny Health Network (AHN) Autoimmunity Institute and Director of the Allegheny Health Network Biobank. He graduated with academic distinction, phi beta kappa, from Cornell University, received his medical degree from Johns Hopkins University School of Medicine. He completed a medical Internship and Residency, alpha omega alpha, at Johns Hopkins Hospital, and Fellowships in Rheumatology and Molecular Biology and Genetics at Johns Hopkins. He has served as Deputy Director of the Johns Hopkins Division of Rheumatology, Director of Research for the University of Pittsburgh Arthritis Institute, co-founder of the University of Pittsburgh Lupus Center of Excellence, and Chief Scientific Officer of the AHN Research Institute.<\/p>

    Dr. Ahearn has received the W. Barry Wood Scholarship, an NIH Physician Scientist Training Award, the Hilda Irene Duggan Arthritis Investigator Award, and the Pitt Innovator Award. His research has been supported by multi-million-dollar funding from numerous sources including the National Institutes of Health, Department of Defense, Lupus Foundation of America, American College of Rheumatology, and Alliance for Lupus Research. He has chaired dozens of peer-review panels including those for the National Institutes of health and Department of Defense. Dr. Ahearn has published more than 100 reports with a particular focus on discovery and validation of novel biomarkers for diagnosis and monitoring of autoimmune diseases. He has secured dozens of US and international patents related to these discoveries, which have been licensed, validated, and commercialized by Exagen, Inc.<\/p>

    These pioneering efforts focused on biomarker discovery and validation have been catalyzed by the Allegheny Health Network Biobank, a state-of-the-art resource with biospecimens and highly annotated clinical data obtained from patients with more than 100 different diseases.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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    Meet our Lead Medical Advisor<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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    Susan Manzi, MD, MPH<\/h4>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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    Dr. Manzi is Chair of the Allegheny Health Network (AHN) Medicine Institute and Director of its Lupus Center of Excellence within the Autoimmunity Institute.\u00a0 She is magna cum laude, phi beta kappa graduate of the University of Notre Dame and alpha omega alpha graduate of the University of Pittsburgh School of Medicine, completing her medical internship and residency at Duke University Medical Center, fellowship in rheumatology at University of Pittsburgh Medical Center, and master\u2019s degree in public health from the University of Pittsburgh Graduate School of Public Health.<\/p>

    Dr. Manzi is recognized internationally as an outstanding physician-scientist and inventor with a particular focus on SLE and related autoimmune diseases. Her research has been supported by multi-million-dollar funding from numerous sources, resulting in more than 200 publications and dozens of US and international patents. She has held many leadership positions including Medical Director and past Chair of the Lupus Foundation of America Board of Directors.<\/p>

    Dr. Manzi has been recognized by her peers with awards and honors recognizing her creativity, compassion, leadership, and entrepreneurial success. These include the Jack Meyers Medical Alumni Association Award for excellence in exemplifying medical ideals, annual listing to Best Doctors in America, Pitt Innovator Award, Pittsburgh Business Times: Business Women First Award, Healthcare Hero Award and Fast Tracker Award, Lupus Foundation of America Advocacy Award, Richard E. Deitrick Humanity in Medicine Award, RheumNow: 25 Great Women in Rheumatology, American College of Rheumatology Distinguished Clinical Investigator Award and Mastership of the American College of Physicians.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t

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    Our research partners<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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    We are honored to be partnered with many institutions, organizations and foundations who share our passion in building this state-of-the-art collection of data in order to advance research for RP and related diseases.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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    You can make a difference: Join us in researching Relapsing Polychondritis.<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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    \n\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\tParticipate<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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    \n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"

    \u201cWe don\u2019t have all the answers, but we have purpose\u2014and having purpose changes everything.\u201d Nancy Linn Director \/ Chair, Relapsing Polychondritis Foundation Participate Erin Faight, BS, Principal Investigator What is Relapsing Polychondritis (RP)? Relapsing Polychondritis (RP) is a severe chronic autoimmune disease in which cartilage throughout the body becomes inflamed and breaks down over time. […]<\/p>\n","protected":false},"author":1,"featured_media":308,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"site-sidebar-layout":"no-sidebar","site-content-layout":"page-builder","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"disabled","ast-breadcrumbs-content":"","ast-featured-img":"disabled","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"class_list":["post-13","page","type-page","status-publish","has-post-thumbnail","hentry"],"yoast_head":"\nThe first direct-to-patient research initiative to advance the study of Relapsing Polychondritis | PURPOSE Biobank<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/purposebiobank.org\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"The first direct-to-patient research initiative to advance the study of Relapsing Polychondritis | PURPOSE Biobank\" \/>\n<meta property=\"og:description\" content=\"\u201cWe don\u2019t have all the answers, but we have purpose\u2014and having purpose changes everything.\u201d Nancy Linn Director \/ Chair, Relapsing Polychondritis Foundation Participate Erin Faight, BS, Principal Investigator What is Relapsing Polychondritis (RP)? 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