Second International Hidradenitis Suppurativa Research Symposium

描述（由申请人提供）：项目摘要/摘要在本申请中，我们要求资助一天的研讨会，以提供一个激烈的，高水平的，互动的研讨会完全集中在Hidradenitis Suppurtiva（HS）或痤疮，皮肤病，导致在顶浆分泌轴承皮肤复发性炎症，影响约1%的人口。临床和研究皮肤病学的世界领导者将展示他们的工作，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衰弱疾病的发病机制和遗传基础。研讨会还将提供一个广泛的概述基础和应用研究目前正在进行的，这将是有益的执业皮肤科医生。通过保持会议的私密性和互动性，并在整个会议期间保持发言者，将在尊重和熟悉的基础上在小组之间建立国家和国际网络，就像2006年第一届国际HS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弗朗西斯科举行会议，我们将能够最大限度地减少研讨会的总成本，同时最大限度地提高出席率，这对于提高人们对这种认识不足和了解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会议的主要地点。将积极鼓励妇女和代表性不足的少数群体参与，并鼓励Hidradenitis Suppurativa基金会家庭杂志的编辑，《实验皮肤病学》已同意在2009年的一期杂志上免费发表专题报告。还将向所有与会者分发研讨会后调查表，以量化结果。 公共卫生相关性：本次会议与人类健康直接相关，因为它是为了更好地描述和了解化脓性汗腺炎（HS），这是一种知之甚少的使人衰弱的炎症性皮肤病，影响约1%的人口，通常被称为“孤儿”疾病。HS的主要特征包括疼痛和慢性复发、深位滤泡结节、丘疹、脓疱和脓肿、瘢痕、窦道和复发性分泌物。最常受影响的区域是手臂下，腹股沟，臀部和乳房下。这种疾病是可变的和复发性的。它可能在一个区域出现孤立或多个病变，在许多区域出现病变，或者在更严重的情况下，可能有大面积的皮肤受到难以愈合的复发性引流病变的影响。HS的诊断通常基于临床检查和病史。因此，HS经常被误诊，准确诊断的时间可以以数年甚至数十年来衡量。这些问题加剧了这种疾病的高发病率和致残性。尽管2000年发表了一种专门针对HS家族性转移的临床研究而设计的协作诊断方法，但HS没有普遍接受的诊断标准，这对患者，医生和研究人员都提出了重大挑战。关于诊断的全球共识应该是一个优先事项，以促进HS研究的进展，并协助医生作出更准确和及时的诊断。HS的广泛、不可预测和非线性进展可能会对心理和身体健康产生显著的长期不良影响，严重降低生活质量。那些患有HS的人往往无法获得适当的，对一种基本上看不见的疾病的移情识别，因为它主要出现在他们身体的亲密区域及其周围。HS很难忍受，因为它通常对治疗有抵抗力。抑郁、沮丧和焦虑是常见的，由于慢性疼痛、活动受限、持续性引流病变以及需要经常更换衣服和敷料而退出社会、工作和性关系也是常见的。此外，HS的经济影响可能是巨大的。即使在轻度至中度HS中，估计休假时间也比平均水平高出50%，有时患者很难维持就业。严重的HS也可能导致暂时或永久性残疾。健康保险往往不足或无法获得，这增加了疾病的经济负担。用生物制剂进行实验性治疗是有希望的，但治疗费用昂贵，保险批准仍然存在问题。治疗对局部和全身治疗无反应的HS的黄金标准是根治性手术，住院治疗，家庭护理，延长伤口护理管理和长恢复时间，手术部位或其他非手术部位的感染和复发风险相对较高。最近的研究还表明，非腋窝区域的长期HS是鳞状细胞癌（SCC）的癌前病变，通常表现为晚期并导致死亡，这突出了迫切需要增加临床意识和研究的另一个重要原因。

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.