{"id":954,"date":"2019-07-21T13:26:32","date_gmt":"2019-07-21T17:26:32","guid":{"rendered":"http:\/\/www.dysautonomiainternational.org\/blog\/wordpress\/?p=954"},"modified":"2019-07-21T14:32:23","modified_gmt":"2019-07-21T18:32:23","slug":"the-2019-conference-research-study-immune-phenotyping-in-pots","status":"publish","type":"post","link":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/the-2019-conference-research-study-immune-phenotyping-in-pots\/","title":{"rendered":"The 2019 Conference Research Study: Immune-Phenotyping in POTS"},"content":{"rendered":"<p>Next weekend Dysautonomia International will launch one of the most in-depth immunological studies in POTS to date during our 7th Annual Conference in Philadelphia! Titled &#8220;Immune-Phenotyping in Postural Orthostatic Tachycardia Syndrome,&#8221; the study takes a deep dive into possible immune mechanisms in POTS. You can support this important research by making a contribution to our POTS Research Fund at <a href=\"https:\/\/www.dysautonomiainternational.org\/page.php?ID=178\" target=\"_blank\"><span style=\"color: #00ccff;\"><strong>CurePOTS.org<\/strong><\/span><\/a>.<\/p>\n<p>We&#8217;ve put together some FAQs about this year&#8217;s study.<\/p>\n<p><span style=\"text-decoration: underline;\"><strong>Who is running\u00a0this year&#8217;s study?<\/strong><\/span><br \/>\nAfter helping researchers from Vanderbilt University, Mayo Clinic, UT Southwestern and other universities organize the annual Dysautonomia International Conference research study for the past five years,\u00a0Dysautonomia International founder and President, Lauren Stiles, will lead this year&#8217;s study. Lauren was recruited to serve as a Research Assistant Professor of Neurology at Stony Brook University&#8217;s School of Medicine last year to help the university expand its autonomic disorders research, education and clinical care. She\u00a0will be joined by co-investigators from Sweden, Dr. Jonas Axelsson, Medical Director of the Center for Apheresis and Stem Cell Handling at the Karolinska Institutet Hospital, and Dr. Artur Fedorowski,\u00a0Senior Consultant for the Department of Cardiology and Head of the Syncope Unit at Sk\u00e5ne University Hospital. Drs. Axellson and Fedorowski have teamed up on several prior POTS studies<span style=\"color: #00ccff;\">\u00a0<span style=\"color: #000000;\">that <strong><span style=\"color: #00ccff;\"><a style=\"color: #00ccff;\" href=\"https:\/\/www.dysautonomiainternational.org\/blog\/wordpress\/research-update-low-furin-levels-in-pots\/\" target=\"_blank\">found interesting immunological results<\/a><\/span><\/strong>,\u00a0and they have set up the leading POTS research\u00a0program\u00a0in Europe.<\/span><\/span><span style=\"color: #000000;\">\u00a0<\/span>The study team also includes\u00a0incredible young researchers from Penn State Hershey, Rush University, University of Calgary, and Columbia University who are forging a career in medicine and academic research after their own experiences with POTS.<\/p>\n<p><span style=\"text-decoration: underline;\"><strong>What are they studying?<\/strong><\/span><br \/>\nDuring the conference, the\u00a0research team will screen 100 POTS patient volunteers for the following:<\/p>\n<ul>\n<li><i><strong>HLA genetic markers:<\/strong>\u00a0<\/i>these are genetic markers that regulate the immune system;<\/li>\n<li><i><strong>immune cell phenotyping:\u00a0<\/strong>\u00a0<\/i>B-cells, T-cells and NK-cells from collected peripheral blood mononuclear cells will be assayed with flow-cytometry with labelling according to the Freiburg (CD19, CD21, CD27, IgM, and IgD), FITMAN (CD45, CD4, CD8, CD45RA, CD27, CD69 and HLA-DR) or NK-panel (CD16, CD45 and CD56,), respectively;<i><br \/>\n<\/i><\/li>\n<li><i><strong>whole-tissue reactivity analysis:<\/strong>\u00a0<\/i>serum will be assessed for potential reactivity in routine clinical immunofluorescence assays for neuronal, pemphigoid and adrenal gland antibodies;<\/li>\n<li><i><strong>novel calcium-mobilization assay:<\/strong> s<\/i>erum samples will also be tested using a novel, proprietary ELISA assay to quantify the amount of IgG reactive to calcium-binding protein;<\/li>\n<li><strong><i>antibodies &amp; immune markers associated with <\/i><i>Sj\u00f6gren\u2019s<\/i><\/strong><i><strong> syndrome<\/strong>:\u00a0<\/i>nRNP\/Sm, Sm, SS-A, Ro-52, SS-B, Scl-70, PM-Scl, Jo-1, centromere protein B, PCNA, dsDNA, nucleosomes, histones, ribosomal P-proteins, AMA and M2;<\/li>\n<li><i><strong>antibodies associated with autoimmune encephalitis:<\/strong>\u00a0<\/i>NMDAR, AMPAR, GABAR, LGI1, CASPR2;<\/li>\n<li><strong><i>antibodies associated with neuromyelitis <\/i><\/strong><i><strong>optica:<\/strong>\u00a0<\/i>NMO, AQP4;<\/li>\n<li><strong><i>antibodies associated with polyneuropathy:\u00a0<\/i><\/strong>GM, GM1, GM2, GM3, GD1b, GQ1b;<\/li>\n<li><i><strong>antibodies associated with myasthenia gravis:<\/strong>\u00a0<\/i>muscle AChR; and,<\/li>\n<li><em><strong>urine screening<\/strong> <\/em>for albuminuria, hematuria, leukocyturia, nitrate, sodium, potassium, magnesium, chloride, creatinine, urea and pH.<\/li>\n<\/ul>\n<p>Thankfully, the researchers only need two tubes of blood and a small urine sample to run all of these tests. They will also\u00a0conduct\u00a010-minute bedside orthostatic vitals, a Beighton exam to screen for joint hypermobility, a medical history interview, and a survey to capture other information about the patient&#8217;s health and family history.<\/p>\n<p>After the conference study is done, any remaining blood, serum and urine specimens\u00a0will be stored in a biobank at the Karolinska Institutet for future studies analyzing other biomarkers of interest in POTS. Dysautonomia International has already been contacted by other researchers seeking access to this biobank material. Biobank\u00a0specimens\u00a0will be stored in a de-identified manner, meaning that the identify of the individual who provided the specimen remains anonymous. This is\u00a0designed to protect patient privacy.<\/p>\n<figure style=\"width: 640px\" class=\"wp-caption aligncenter\"><a href=\"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-content\/uploads\/2019\/07\/16760076824_8fab97208d_z.jpg\" rel=\"attachment wp-att-956\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-956 size-full\" src=\"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-content\/uploads\/2019\/07\/16760076824_8fab97208d_z.jpg\" alt=\"Colorized T- cell lymphocyte microscopy image courtesy of NIAID.\" width=\"640\" height=\"480\" srcset=\"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-content\/uploads\/2019\/07\/16760076824_8fab97208d_z.jpg 640w, https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-content\/uploads\/2019\/07\/16760076824_8fab97208d_z-300x225.jpg 300w\" sizes=\"auto, (max-width: 640px) 100vw, 640px\" \/><\/a><figcaption class=\"wp-caption-text\">T- cell lymphocyte colorized microscopy image courtesy of NIAID.<\/figcaption><\/figure>\n<p><span style=\"text-decoration: underline;\"><strong>Why are the researchers studying these biomarkers?<\/strong><\/span><br \/>\nPrior research suggests that a majority of people diagnosed with POTS have an autoimmune problem that may be causing or contributing to their symptoms.\u00a0Almost every autoantibody that has been studied in POTS has been found in a higher percentage of POTS patients than it is found in the general population, but we really don&#8217;t know why that is and what other antibodies may be involved. The conference study is designed to dig a little deeper and search a little broader for immunological biomarkers in POTS, to get a bigger, and hopefully clearer, picture of what&#8217;s going on.<\/p>\n<p>This <span style=\"color: #00ccff;\"><strong><a style=\"color: #00ccff;\" href=\"https:\/\/www.autonomicneuroscience.com\/article\/S1566-0702(18)30013-4\/fulltext\" target=\"_blank\">review article<\/a><\/strong><\/span> provides a good summary of what has been found to date regarding autoimmunity in POTS, although even more research on autoimmunity in POTS has published since that review article came out in December 2018. There are two recent articles of note.<\/p>\n<p>The first, a study finding that a subset of <strong><span style=\"color: #00ccff;\"><a style=\"color: #00ccff;\" href=\"https:\/\/onlinelibrary.wiley.com\/doi\/full\/10.1002\/acn3.766\" target=\"_blank\">Korean POTS patients have HLA genetic markers highly associated with the development of autoimmune disease<\/a><\/span><\/strong>, also finding beta2 adrenergic receptor antibodies in these patients, and noting that two of these patients who received immunotherapy responded well to it. HLA markers can vary by race and ethnicity, so it&#8217;s important to search for these markers in other races and ethnicities to see if it&#8217;s a common finding amongst POTS patients of all backgrounds.<\/p>\n<p>The second, a\u00a0study from Dr. David Kem&#8217;s lab at the\u00a0University of Oklahoma confirming <strong><span style=\"color: #00ccff;\"><a style=\"color: #00ccff;\" href=\"https:\/\/www.sciencedirect.com\/science\/article\/pii\/S2589909019300061?via%3Dihub\" target=\"_blank\">a much higher rate of adrenergic receptor antibody activity in POTS patients compared to healthy people<\/a> <\/span><\/strong>(the samples were collected during our 2014 Conference).<\/p>\n<p>Inside scoop for our blog readers&#8230; we expect to see another important autoimmune POTS paper coming out\u00a0in the next month or two.<\/p>\n<p><span style=\"text-decoration: underline;\"><strong>How can I participate in\u00a0the conference\u00a0study?<br \/>\n<\/strong><\/span>Study enrollment will be open to the first 100 registered conference guests who volunteer to\u00a0participate\u00a0in the study and meet the enrollment criteria below. Please note, the conference is sold out and there are no volunteer or scholarship passes remaining. Study enrollment will begin at 6pm on Friday evening in the main hotel ballroom. The research team will be available to answer your questions and sign you up if you&#8217;re interested in participating. The actual study procedures will take place on Saturday and Sunday during the conference. Registered conference guests will receive an email this week with a detailed schedule.<\/p>\n<p><span style=\"color: #808080;\"><b>Inclusion<\/b> <b>Criteria<\/b><\/span><b><br \/>\n<\/b>\u00b7 Individuals previously diagnosed with POTS by a physician<br \/>\n\u00b7 Ages 12-80 years<br \/>\n\u00b7 Male and female subjects are eligible<br \/>\n\u00b7 Able and willing to provide informed consent (if \u226518 years) or assent with parental consent if age 12-17 years<\/p>\n<p><span style=\"color: #808080;\"><b>Exclusion Criteria<\/b><\/span><br \/>\n\u00b7 Inability to give, or withdrawal of, informed consent<br \/>\n\u00b7 Use of immune modulating treatments within the prior 6 months<br \/>\n\u00b7 Women who are or may be pregnant<br \/>\n\u00b7 Other factors which in the investigator\u2019s opinion would prevent the subject from completing the protocol<\/p>\n<p>Study volunteers do not need to stop any of their medications, nor do they have to bring medical records to the conference. The study will be performed while\u00a0the\u00a0participants\u00a0are dressed in\u00a0their normal clothing, but the researchers will ask\u00a0volunteers to remove any compression garments\u00a0they wear before\u00a0they arrive in the study room, because these garments can impact orthostatic vitals.<\/p>\n<p><span style=\"text-decoration: underline;\"><strong>Will study participants get their lab results?<\/strong><\/span><br \/>\nThe researchers\u00a0can share results from HLA marker and antibody analyses\u00a0if study participants choose to receive them. However, they cannot provide clinical\u00a0interpretation of any of the results.<\/p>\n<p><span style=\"text-decoration: underline;\"><strong>When will the results of the study be publicly available?<\/strong><\/span><br \/>\nThe researchers will move as quickly as possible to complete the study and publish the results, but it can take\u00a0more than a\u00a0year to published a detailed research paper like this. We will share the eventual journal article\u00a0through Dysautonomia International&#8217;s social media channels and <span style=\"color: #00ccff;\"><strong><a style=\"color: #00ccff;\" href=\"https:\/\/dysautonomiainternational.salsalabs.org\/email_list\" target=\"_blank\">email list<\/a><\/strong><\/span> as soon as it&#8217;s available.<\/p>\n<p><span style=\"text-decoration: underline;\"><strong>How is this research being funded?<br \/>\n<\/strong><\/span>This research is being funded through Dysautonomia International&#8217;s POTS Research Fund as well as some grants from the Swedish government. You can support this work and other critically-needed POTS research by making a contribution at <a href=\"http:\/\/www.dysautonomiainternational.org\/page.php?ID=178\" target=\"_blank\"><span style=\"color: #00ccff;\"><strong>CurePOTS.org<\/strong><\/span><\/a>.<\/p>\n<a class=\"synved-social-button synved-social-button-follow synved-social-size-16 synved-social-resolution-single synved-social-provider-facebook nolightbox\" data-provider=\"facebook\" target=\"_blank\" rel=\"nofollow\" title=\"Follow us on Facebook\" href=\"http:\/\/www.facebook.com\/dysautonomiainternational\" style=\"font-size: 0px;width:16px;height:16px;margin:0;margin-bottom:5px;margin-right:5px\"><img loading=\"lazy\" decoding=\"async\" alt=\"Facebook\" title=\"Follow us on Facebook\" class=\"synved-share-image synved-social-image synved-social-image-follow\" width=\"16\" height=\"16\" style=\"display: inline;width:16px;height:16px;margin: 0;padding: 0;border: none;box-shadow: none\" 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synved-social-image synved-social-image-share\" width=\"16\" height=\"16\" style=\"display: inline;width:16px;height:16px;margin: 0;padding: 0;border: none;box-shadow: none\" src=\"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-content\/plugins\/social-media-feather\/synved-social\/image\/social\/regular\/32x32\/mail.png\" \/><\/a><a class=\"synved-social-credit\" target=\"_blank\" rel=\"nofollow\" title=\"WordPress Social Media Feather\" href=\"http:\/\/synved.com\/wordpress-social-media-feather\/\" style=\"color:#444;text-decoration:none;font-size:8px;margin-left:5px;vertical-align:10px;white-space:nowrap\"><span>by <\/span><img loading=\"lazy\" decoding=\"async\" style=\"display: inline;margin:0;padding:0;width:16px;height:16px\" width=\"16\" height=\"16\" alt=\"feather\" src=\"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-content\/plugins\/social-media-feather\/synved-social\/image\/icon.png\" \/><\/a>","protected":false},"excerpt":{"rendered":"<p>Next weekend Dysautonomia International will launch one of the most in-depth immunological studies in POTS to date during our 7th Annual Conference in Philadelphia! Titled &#8220;Immune-Phenotyping in Postural Orthostatic Tachycardia Syndrome,&#8221; the study takes a deep dive into possible immune mechanisms in POTS. You can support this important research by making a contribution to our &hellip; <a href=\"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/the-2019-conference-research-study-immune-phenotyping-in-pots\/\" class=\"more-link\">Continue reading <span class=\"screen-reader-text\">The 2019 Conference Research Study: Immune-Phenotyping in POTS<\/span> <span class=\"meta-nav\">&rarr;<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-954","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/posts\/954","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/comments?post=954"}],"version-history":[{"count":10,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/posts\/954\/revisions"}],"predecessor-version":[{"id":966,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/posts\/954\/revisions\/966"}],"wp:attachment":[{"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/media?parent=954"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/categories?post=954"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/dysautonomiainternational.org\/blog\/wordpress\/wp-json\/wp\/v2\/tags?post=954"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}