Postural orthostatic tachycardia syndrome (POTS): Priorities for POTS care and research from a 2019 National Institutes of Health Expert Consensus Meeting

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Postural orthostatic tachycardia syndrome (POTS): Priorities for POTS care and research from a 2019 National Institutes of Health Expert Consensus Meeting – Part 2
Autonomic Neuroscience ( IF 2.7 ) Pub Date : 2021-06-30 , DOI: 10.1016/j.autneu.2021.102836
Satish R Raj ₁ , Kate M Bourne ₂ , Lauren E Stiles ₃ , Mitchell G Miglis ₄ , Melissa M Cortez ₅ , Amanda J Miller ₆ , Roy Freeman ₇ , Italo Biaggioni ₈ , Peter C Rowe ₉ , Robert S Sheldon ₂ , Cyndya A Shibao ₁₀ , Andre Diedrich ₁₁ , David M Systrom ₁₂ , Glen A Cook ₁₃ , Taylor A Doherty ₁₄ , Hasan I Abdallah ₁₅ , Blair P Grubb ₁₆ , Artur Fedorowski ₁₇ , Julian M Stewart ₁₈ , Amy C Arnold ₁₉ , Laura A Pace ₂₀ , Jonas Axelsson ₂₁ , Jeffrey R Boris ₂₂ , Jeffrey P Moak ₂₃ , Brent P Goodman ₂₄ , Kamal R Chémali ₂₅ , Tae H Chung ₂₆ , David S Goldstein ₂₇ , Anil Darbari ₂₃ , Steven Vernino ₂₈

Affiliation

Department of Cardiac Sciences, Libin Cardiovascular Institute, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada; Autonomic Dysfunction Center, Division of Clinical Pharmacology, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA.
Department of Cardiac Sciences, Libin Cardiovascular Institute, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
Department of Neurology, Stony Brook University Renaissance School of Medicine, Stony Brook, NY, USA; Dysautonomia International, East Moriches, NY, USA.
Department of Neurology and Neurological Sciences, Stanford University School of Medicine, Palo Alto, CA, USA.
Department of Neurology, University of Utah, Salt Lake City, UT, USA.
Department of Neural and Behavioral Sciences, Pennsylvania State University College of Medicine, Hershey, PA, USA.
Department of Neurology, Harvard Medical School, Boston, MA, USA; Center for Autonomic and Peripheral Nerve Disorders, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Autonomic Dysfunction Center, Division of Clinical Pharmacology, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA; Autonomic Dysfunction Center, Division of Clinical Pharmacology, Department of Pharmacology, Vanderbilt University Medical Center, Nashville, TN, USA.
Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Autonomic Dysfunction Center, Division of Clinical Pharmacology, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA.
Autonomic Dysfunction Center, Division of Clinical Pharmacology, Department of Medicine and Biomedical Engineering, Vanderbilt University Medical Center, Nashville, TN, USA.
Pulmonary and Critical Care Medicine, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, USA.
Department of Neurology, Uniformed Services University, Bethesda, MD, USA.
Division of Rheumatology, Allergy, and Immunology, Department of Medicine, University of California at San Diego, La Jolla, CA, USA.
Children's Heart Institute, Fredericksburg, VA, USA.
Division of Cardiology, Department of Medicine, The University of Toledo Medical Center, USA.
Department of Clinical Sciences, Lund University, Malmö, Sweden; Department of Cardiology, Skåne University Hospital, Malmö, Sweden.
Center for Hypotension, Departments of Pediatrics and Physiology, New York Medical College, Valhalla, NY USA.
Autonomic Dysfunction Center, Division of Clinical Pharmacology, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA; Department of Neural and Behavioral Sciences, Pennsylvania State University College of Medicine, Hershey, PA, USA.
Center for Genomic Medicine and Department of Pediatrics, Division of Medical Genetics and Genomics, University of Utah, Salt Lake City, UT, USA.
Department of Clinical Immunology, Karolinska University Hospital, Stockholm, Sweden.
Jeffrey R. Boris, MD LLC, Moylan, PA, USA.
Department of Pediatrics, George Washington University School of Medicine and Health Sciences, Washington, DC, USA.
Neuromuscular Division, Department of Neurology, Mayo Clinic, Scottsdale, AZ, USA.
Department of Neurology, Eastern Virginia Medical School, Division of Neurology, Neuromuscular and Autonomic Center, Sentara Healthcare, Norfolk, VA, USA.
Department of Physical Medicine and Rehabilitation, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Autonomic Medicine Section, Clinical Neurosciences Program, Division of Intramural Research, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD, USA.
Department of Neurology, UT Southwestern Medical Center, Dallas, TX, USA.

The National Institutes of Health hosted a workshop in 2019 to build consensus around the current state of understanding of the pathophysiology of postural orthostatic tachycardia syndrome (POTS) and to identify knowledge gaps that must be addressed to enhance clinical care of POTS patients through research. This second (of two) articles summarizes current knowledge gaps, and outlines the clinical and research priorities for POTS.

POTS is a complex, multi-system, chronic disorder of the autonomic nervous system characterized by orthostatic intolerance and orthostatic tachycardia without hypotension. Patients often experience a host of other related disabling symptoms. The functional and economic impacts of this disorder are significant. The pathophysiology remains incompletely understood.

Beyond the significant gaps in understanding the disorder itself, there is a paucity of evidence to guide treatment which can contribute to suboptimal care for this patient population. The vast majority of physicians have minimal to no familiarity or training in the assessment and management of POTS.

Funding for POTS research remains very low relative to the size of the patient population and impact of the syndrome. In addition to efforts to improve awareness and physician education, an investment in research infrastructure including the development of standardized disease-specific evaluation tools and outcome measures is needed to facilitate effective collaborative research. A national POTS research consortium could facilitate well-controlled multidisciplinary clinical research studies and therapeutic trials. These priorities will require a substantial increase in the number of research investigators and the amount of research funding in this area.

中文翻译：

体位性心动过速综合征 (POTS)：2019 年美国国立卫生研究院专家共识会议的 POTS 护理和研究的优先事项 - 第 2 部分

美国国立卫生研究院于 2019 年举办了一次研讨会，旨在围绕对体位性心动过速综合征 (POTS) 病理生理学的当前理解状态达成共识，并确定必须解决的知识差距，以通过研究加强对 POTS 患者的临床护理。第二篇（共两篇）文章总结了当前的知识差距，并概述了 POTS 的临床和研究重点。

POTS是一种复杂的、多系统的、慢性的自主神经系统疾病，其特征是直立性不耐受和无低血压的直立性心动过速。患者经常会出现许多其他相关的致残症状。这种疾病的功能和经济影响是显着的。病理生理学仍未完全了解。

除了对疾病本身的理解存在重大差距外，缺乏指导治疗的证据，这可能导致对该患者群体的护理不理想。绝大多数医生在 POTS 的评估和管理方面几乎没有熟悉或培训。

相对于患者群体的规模和综合征的影响，对 POTS 研究的资助仍然非常低。除了努力提高认识和医生教育外，还需要对研究基础设施进行投资，包括开发标准化的疾病特异性评估工具和结果措施，以促进有效的合作研究。一个国家 POTS 研究联盟可以促进控制良好的多学科临床研究和治疗试验。这些优先事项将需要大量增加研究人员的数量和该领域的研究资金数额。

更新日期：2021-06-30

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