Pediatric Dermatology Research Alliance (PeDRA) Annual Conference

小儿皮肤病学研究联盟 (PeDRA) 年会

• 批准号: 8986128
• 负责人: Anna Lee Bruckner
• 金额: $ 3万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN DIEGO
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-09-01 至 2017-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8986128
• 关键词: Address; Applications Grants; Area; Basic Science; Blood Vessels; Case Study; Child; Child Care; Childhood; Clinical; Clinical Research; Clinical Research Protocols; Clinical Trials; Clinical Trials Design; Consensus; Consensus Development; Cutaneous; Dermatologic; Dermatologist; Dermatology; Disease; Educational process of instructing; Expert Opinion; FDA approved; Fostering; Genetic; Genomics; Goals; Group Meetings; Guidelines; Health; Hereditary Disease; Inflammatory; Inherited; Instruction; Knowledge; Lesion; Life; Malignant Neoplasms; Measures; Methods; Modeling; Multicenter Studies; Natural History; Neonatal; Outcome; Output; Patient advocacy; Patients; Performance; Pharmaceutical Preparations; Physicians; Premature Infant; Process; Research; Research Design; Research Infrastructure; Research Methodology; Research Personnel; Research Priority; Scientist; Skin; Staging; Strategic Planning; Support Groups; Systemic Therapy; Techniques; Technology; Therapeutic; Therapeutic Intervention; Time; Translational Research; Translations; Treatment Protocols; Update; Vision; Vitiligo; Work; advocacy organizations; base; clinical care; cohort; comparative effectiveness; data management; design; drug development; effective intervention; improved; innovation; knowledge base; lectures; malformation; meetings; novel; organizational structure; patient advocacy group; posters; premature; prevent; public health relevance; repository; response; skills; skin disorder; symposium; therapy outcome; tumor; working group

 DESCRIPTION (provided by applicant): Pediatric dermatologists care for children with a broad range of rare and common disorders, such as severe inflammatory skin diseases that require systemic therapy, disfiguring vascular birthmarks, and genetic skin disorders and cutaneous tumors that can be life-endangering. There is a paucity of FDA-approved therapies for these severe conditions and a great need for standardized treatment protocols and methods to measure response. The Pediatric Dermatology Research Alliance (PeDRA) was established to address this therapeutic shortfall. PeDRA's vision is to create and sustain collaborative research networks that conduct well- designed, high-quality multicenter studies to better understand, prevent, treat and cure dermatologic diseases in children. The PeDRA Annual Conference is central to achieving these goals and includes didactic lectures, interactive discussions led by experts in research methodology, panel and poster sessions, and disease-focused small-group meetings. The specific aims are: 1) To provide new and established PeDRA investigators with an essential knowledge base and infrastructure to conduct high-quality multicenter research in pediatric skin disorders; 2) To identify and prioritize the clinica needs and therapeutic opportunities in five specific areas of pediatric dermatology: inflammatory skin diseases, birthmarks, genetic skin disorders, premature and term neonatal skin, and cutaneous malignancies and precursor lesions; and 3) To enhance opportunities for translational research initiatives and innovative therapeutic approaches by facilitating idea-sharing and dialogue between basic scientists, physician investigators, and clinicians.

 描述（由申请人提供）：儿科皮肤科医生负责治疗患有各种罕见和常见疾病的儿童，例如需要全身治疗的严重炎症性皮肤病、毁容的血管胎记以及可能危及生命的遗传性皮肤病和皮肤肿瘤。 FDA 批准的针对这些严重疾病的治疗方法很少，并且非常需要标准化的治疗方案和测量反应的方法。儿科皮肤病学研究联盟 (PeDRA) 的成立就是为了解决这一治疗短缺问题。 PeDRA 的愿景是创建和维持合作研究网络，开展精心设计、高质量的多中心研究，以更好地了解、预防、治疗和治愈儿童皮肤病。 PeDRA 年会是实现这些目标的核心，包括教学讲座、研究方法专家主导的互动讨论、小组和海报会议以及以疾病为中心的小组会议。具体目标是： 1) 为新的和已建立的 PeDRA 研究人员提供必要的知识库和基础设施，以开展高质量的儿科皮肤病多中心研究； 2) 确定并优先考虑儿科皮肤病学五个特定领域的临床需求和治疗机会：炎症性皮肤病、胎记、遗传性皮肤病、早产儿和足月新生儿皮肤、皮肤恶性肿瘤和先兆病变； 3) 通过促进基础科学家、医师研究人员和临床医生之间的思想共享和对话，增加转化研究计划和创新治疗方法的机会。