Consensus Conference Grant

University Of Colorado Denver, Aurora CO

Investigators

Abstract

Individuals with sickle cell disease now live into the 6th-7th decade of life. These patients experience[unreadable] chronic complications of sickle cell disease, as well as typical adult-onset conditions, which are not[unreadable] well-addressed by available literature and guidelines focused on pediatric care. Given scarce data, adult[unreadable] treatment recommendations are often non-specific or written from a single perspective, which may limit[unreadable] broad application and acceptance. However, significant clinical expertise and practical management[unreadable] approaches have evolved, representing an untapped resource. In order to capture this expertise,[unreadable] disseminate available knowledge and enhance research collaboration, five yearly guideline[unreadable] development conferences will be held in conjunction with the National Sickle Cell Clinical Trials meeting to[unreadable] address the most challenging areas: chronic and acute pain; renal disease; pulmonary disease;[unreadable] transfusion and stem cell transplantation; and routine health care maintenance, women's and men's[unreadable] health and psychosocial issues. Prior to each conference, a panel of sickle cell experts, other pertinent[unreadable] specialists, and community-based providers will assess available literature, using the American College[unreadable] of Chest Physicians' model, integrating provider expertise and experience, to develop management[unreadable] recommendations and research priorities. These will be presented and discussed at the guideline[unreadable] development conference; perspective on pertinence, acceptability and prioritization will be provided by[unreadable] patient and community group panel members. The audience, consisting of providers, patients, and[unreadable] community members, will provide input for the panel as it establishes management recommendations,[unreadable] quality assurance/outcomes measures and research priorities. Conference proceedings will be[unreadable] submitted to the National Heart, Lung and Blood Institute and other appropriate institutes. Specific[unreadable] findings will be reported in pertinent primary care, specialty journals, and websites. Management[unreadable] recommendations will also be available for possible implementation within sickle cell treatment centers[unreadable] established by the Talent/Schumer Sickle Cell Treatment Act of 2003. This proposal will help health care[unreadable] providers, working with patients and the community, establish practical management approaches to[unreadable] challenging health care issues facing adults with sickle cell disease and select important research goals.