Siegel Dawn H, Choate Keith A, Drolet Beth A, Frieden Ilona J, Rittenberg Sheila, Teng Joyce M, Tom Wynnis L, Williams Mary L, Eichenfield Lawrence F, Paller Amy S
Departments of Dermatology and Pediatrics, Medical College of Wisconsin, Milwaukee, Wisconsin, USA.
Departments of Dermatology and Pathology, Yale University, New Haven, Connecticut, USA.
J Invest Dermatol. 2014 Nov;134(11):2671-2674. doi: 10.1038/jid.2014.227.
Skin disease research involving children currently faces several major hurdles and as a result, many therapies are only available for off-label use in children and many of the most pressing clinical needs of our pediatric population remain unsolved. A strategic planning committee of the Society for Pediatric Dermatology (SPD) identified the need for an organized, inclusive research alliance to augment the resources of individual practitioners and pre-existing smaller collaborative groups and facilitate robust, multicenter basic, translational, and clinical research and therapeutic trials. A December 2011 National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Roundtable on Pediatric Dermatology further detailed the therapeutic gaps and barriers to translation of scientific advances to clinical practice. Building on these forums, in July 2012, a group of interested investigators met in Monterey, CA to develop the infrastructure for collaborative pediatric skin research, now called the Pediatric Dermatology Research Alliance (PeDRA). The vision of PeDRA is to create sustainable collaborative research networks to better understand, prevent, treat and cure dermatologic diseases in children. From that starting point, subcommittees and expert members were added, stakeholders identified, and seed funding garnered, with the first PeDRA stand-alone research meeting realized in Chicago, IL in October 2013.
目前,涉及儿童的皮肤病研究面临几个主要障碍,因此,许多疗法仅可在儿童中用于标签外使用,而我们儿科人群中许多最紧迫的临床需求仍未得到解决。儿科皮肤病学会(SPD)的一个战略规划委员会认识到,需要一个有组织、包容性的研究联盟,以增加个体从业者和现有较小协作组的资源,并促进有力的多中心基础研究、转化研究、临床研究和治疗试验。2011年12月,美国国立关节炎、肌肉骨骼和皮肤病研究所(NIAMS)召开了一次儿科皮肤病学圆桌会议,进一步详细阐述了治疗差距以及科学进展转化为临床实践的障碍。基于这些论坛,2012年7月,一群感兴趣的研究人员在加利福尼亚州蒙特雷会面,为协作性儿科皮肤研究建立基础设施,即现在的儿科皮肤病研究联盟(PeDRA)。PeDRA的愿景是创建可持续的协作研究网络,以更好地理解、预防、治疗和治愈儿童皮肤病。从那时起,增加了小组委员会和专家成员,确定了利益相关者,并获得了种子资金,2013年10月在伊利诺伊州芝加哥举行了第一次PeDRA独立研究会议。