Second International Hidradenitis Suppurativa Research Symposium

描述(申请人提供)：项目概要/摘要在本申请中，我们请求为一个为期一天的研讨会提供资金，以提供一个紧张、高水平、互动的研讨会，完全集中在过敏性汗腺炎(HS)或反面痤疮，这是一种皮肤病，会导致大汗腺分泌皮肤反复发炎，影响大约1%的人口。皮肤科临床和研究领域的世界领先者将介绍他们的工作，共同努力，就HS的临床和诊断特征、目前可用的最佳治疗方案以及最新研究重点确定这种使身体和心理衰弱的疾病的发病机制和遗传基础达成共识。研讨会还将提供目前正在进行的基础和应用研究的广泛概述，这些研究将对执业皮肤科医生有用。通过保持会议的亲密性和互动性，发言者在整个会议期间都留在会议中，将在小组中建立基于尊重和熟悉的国家和国际网络，就像2006年第一次国际卫生制度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，我们将能够将研讨会总成本降至最低，同时最大限度地提高出席人数，这对于提高人们对这种未被充分认识和了解不足的疾病的认识至关重要。研讨会将于2009年3月5日在位于莫斯科中心附近的一家酒店举行，莫斯科内中心是亚洲反兴奋剂机构会议的主要地点。将积极鼓励妇女和代表性不足的少数群体的参与，Hidradentis SupPurativa Foundation Inc.的主编《实验皮肤病》已同意在未来的2009年一期中以特别报告的形式免费发表研讨会论文集。还将向所有与会者分发研讨会后调查，以量化结果。 公共卫生相关性：与公共卫生的相关性这次会议与人类健康直接相关，因为它是一项努力，以更好地描述和了解化脓性汗管炎(HS)，这是一种知之甚少、使人衰弱的炎症性皮肤病，估计影响1%的人口，通常被描述为“孤儿”疾病。HS的主要特征包括疼痛和慢性复发、深层滤泡结节、丘疹、脓肿和脓肿、疤痕形成、窦道和反复分泌物。最常见的受影响的部位是胳膊、腹股沟、臀部和乳房下。这种疾病是可变的，而且是反复发作的。它可能在一个区域出现单个或多个皮损，在多个区域有皮损，或者在更严重的情况下，可能有大片皮肤受到复发的、难以愈合的引流皮损的影响。HS的诊断通常基于临床检查和病史。因此，HS经常被误诊，准确诊断的时间可能以几年而不是几十年来衡量。这些问题加剧了这种疾病的高发病率和致残性。尽管2000年发表了专门针对HS家族性转移的临床调查的协作性诊断方法，但HS的诊断标准尚无普遍接受的标准，这对患者、医生和研究人员都是一个巨大的挑战。全球关于诊断的共识应该是一个优先事项，以促进HS研究的进步，并帮助医生做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重大的长期不利影响，严重降低生活质量。患有HS的人通常无法得到适当的、同理心的识别，因为这种疾病基本上是看不见的，因为它主要出现在他们身体的亲密区域及其周围。HS很难接受，因为它经常对治疗产生抵抗力。抑郁、沮丧和焦虑很常见，由于慢性疼痛、行动受限、持续性引流损伤以及需要频繁更换衣服和敷料而退出社交、工作和性关系也很常见。此外，房协的经济影响可能会很大。即使在轻度到中度HS中，休假时间估计也比平均水平高出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的残疾。医疗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，但治疗费用高昂，保险审批仍然存在问题。治疗对局部和全身治疗无效的HS的黄金标准是根治性手术，住院、家庭护理、延长伤口护理管理和较长的恢复时间，手术部位或其他非手术区域感染和复发的风险相对较高。最近的研究还表明，长期存在于非腋窝区域的HS是鳞状细胞癌(SCC)的一种癌前状态，通常表现为晚期并导致死亡，这突显了迫切需要提高临床认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.