Second International Hidradenitis Suppurativa Research Symposium

在此申请中，我们要求资助为期一天的研讨会，提供一个高强度，高水平，互动的研讨会，完全关注化脓性汗腺炎（HS）或痤疮，这是一种皮肤病，导致大汗腺皮肤复发性炎症，影响约1%的人口。临床和研究皮肤病学的世界领导人将介绍他们的工作，并共同努力，以确定目前对HS的临床和诊断特征的共识，目前可用的最佳治疗方案，以及最新的研究重点是确定这种身体和心理上使人衰弱的疾病的发病机制和遗传基础。研讨会还将提供基础和应用研究的广泛概述，目前正在进行，这将是有益的皮肤科医生执业。通过保持会议的亲密性和互动性，演讲者在整个会议期间都在场，将在小组之间建立基于尊重和熟悉的国家和国际网络，就像2006年第一届国际卫生研究研讨会之后的情况一样。通过在美国皮肤病学会（AAD）年会开始前一天在旧金山举行会议，我们将能够最大限度地减少总研讨会成本，同时最大限度地提高出席率，这对于提高人们对这种未被认识和知之甚少的疾病的认识至关重要。研讨会将于2009年3月5日在莫斯康中心附近的一家酒店举行，莫斯康中心是AAD会议的主会场。妇女和未被充分代表的少数民族的参与将得到积极鼓励，化脓性汗腺炎基金会旗下杂志《实验皮肤病学》的编辑已同意在2009年的未来一期中免费发表专题报告。我们还将向所有与会者分发会后调查问卷，以量化结果。

DESCRIPTION (provided by applicant): Project Summary/Abstract In this application, we request funding for a one day symposium to provide an intense, high level, interactive symposium focusing entirely on Hidradenitis Suppurtiva (HS) or Acne Inversa, a dermatological disorder that results in recurrent inflammation in apocrine bearing skin and which affects approximately 1% of the population. World leaders in clinical and research dermatology will present their work and work together to define a current consensus on the clinical and diagnostic features of HS, best treatment options currently available, and the latest research focused on defining the pathogenesis and genetic basis for this physically and psychologically debilitating disease. The symposium will also provide a broad overview of basic and applied research currently underway that will be useful for practicing dermatologists. By keeping the meeting intimate and interactive, with speakers staying throughout the meeting, national and international networks based on respect and familiarity will develop amongst the group, as was the case following the First International HS Research Symposium in 2006. By holding the meeting in San Francisco one day prior to the start of the Annual Meeting of the American Academy of Dermatology (AAD), we will be able to minimize total symposium costs while maximizing attendance, which is critical in creating greater awareness for this under-recognized and poorly understood disease. The Symposium will take place on March 5, 2009 at a hotel conveniently located near the Moscone Center, the main site of the AAD meeting. The involvement of women and underrepresented minorities will be actively encouraged, and the editor of the home journal of the Hidradenitis Suppurativa Foundation Inc., "Experimental Dermatology" has agreed to publish symposium proceedings in a special report, free of charge in a future 2009 issue. Post-symposium surveys to all attendees will also be distributed to quantify results. PUBLIC HEALTH RELEVANCE: Relevance to Public Health This meeting has direct relevance to human health in that it is an effort to better characterize and understand Hidradenitis Suppurativa (HS), a poorly understood, debilitating inflammatory skin disease that affects an estimated 1% of the population and which is often characterized as an "orphan" disease. The main features of HS include painful and chronically recurring, deep-seated follicular nodules, papules, pustules and abscesses, scarring, sinus tracts and recurrent discharge. The areas most commonly affected are under the arms, groin, buttocks, and under the breasts. The disease is variable and recurrent. It may present with solitary or multiple lesions in one area, with lesions in many areas, or in more severe cases may have large areas of skin affected by recurrent, draining lesions that are difficult to heal. The diagnosis of HS is usually based on a clinical examination and a patient history. HS is therefore frequently misdiagnosed, and the time to accurate diagnosis may be measured in years, if not decades. These issues compound the high morbidity and disabling nature of the disease. Although a collaborative diagnostic methodology was published in 2000 specifically devised for a clinical investigation regarding the familial transfer of HS, there are no universally accepted diagnostic criteria for HS, which presents a significant challenge for patients, physicians, and researchers alike. Global consensus regarding diagnosis should be a priority in order to facilitate the advancement of HS research and to assist physicians in making more accurate and timely diagnoses. The wide, unpredictable and non-linear progression of HS may lead to significant long- term adverse effects on mental and physical health, severely reducing the quality of life. Those with HS often fail to receive appropriate, empathic recognition for a disease that is largely invisible, as it appears mostly in and around the intimate areas of their bodies. HS is difficult to live with as it is often resistant to therapy. Depression, frustration and anxiety are common, as is withdrawal from social, work and sexual relationships due to chronic pain, restricted mobility, persistent draining lesions and the need to frequently change clothes and dressings. Additionally, the economic impact of HS may be substantial. Even in mild to moderate HS, time off from work has been estimated to be up to 50% higher than average, and sometimes it is difficult for patients to maintain employment. Severe HS may also lead to temporary or permanent disability. Health insurance is often inadequate or unavailable, which adds to the financial burden of the disease. Experimental treatment with biologics holds promise, but the treatments are expensive and insurance approval continues to remain problematic. The gold standard for treating HS that is non-responsive to topical and systemic treatments is radical surgery with hospitalization, home care, extended wound care management and long recovery times, with a relatively high risk for infection and recurrence at the surgical site or other non-surgical areas. Recent research also indicates that long standing HS in non-axillary areas is a pre-malignant condition of squamous cell carcinoma (SCC) which often presents late and results in death, highlighting another significant reason for the urgent necessity for increased clinical awareness and research.