Core--Clinical

核心--临床

• 批准号: 6782230
• 负责人: KAREN A KALINYAK
• 金额: $ 10万
• 依托单位: CINCINNATI CHILDRENS HOSP MED CTR
• 依托单位国家: 美国
• 财政年份: 2003
• 资助国家: 美国
• 起止时间: 2003-07-11 至 2008-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6782230
• 关键词: biomedical facility; comprehensive care; cooperative study; human subject; medical outreach /case finding; patient /disease registry; patient oriented research; sickle cell anemia

The clinical core provides comprehensive care for 248 children, teenagers, and young adults with sickle cell disease (SCD) followed in the pediatric sickle cell clinic and 132 adult patients followed in the adult clinic at University Hospital. The clinical care component of patient services is a system of high quality, readily available medical and psychosocial care that responds to the patient's needs. Our multi-disciplinary approach integrates the skills of medical subspecialists, social workers, counselors, psychologists, and nurses to meet the patient's and family's needs. The majority of the pediatric patients in this program are born in the Greater Cincinnati area and are identified by newborn screening program. The Cincinnati Comprehensive Sickle Cell Center (CCSCC) continues to take a leadership role in insuring appropriate and timely follow-up for infants born in this area. Because of this, no baby born and screened in this area has been lost to follow-up. The clinical care component works effectively with the primary care provider and emphasizes a smooth transition into adult care. The clinical care component addresses educational, vocational and psychosocial aspects of patients with SCD. In addition, the clinical care component serves to promote both clinical and basic research that may benefit patients with SCD. The specific aims of the Clinical Core are 1). to provide comprehensive care to pediatric and adult patients with sickle cell disease (SCD), 2) to maintain a stable resource of patients for clinical and basic science research activities and to build, maintain and fully utilize an infrastructure which will provide the resources and support to conduct clinical research, 3) to provide training opportunities for residents, fellows, medical students, nursing students, as well as other health care professionals, and 4) to continue our already established collaborative relationship with the primary care physicians in the community and in the medical center to ensure that all patients with sickle cell disease receive the benefits of a comprehensive program regardless of the managed care program in which they are enrolled.

临床核心为248名儿童、青少年和年轻人提供全面护理，这些儿童、青少年和年轻人在儿科镰状细胞病诊所接受治疗，132名成人患者在大学医院的成人诊所接受治疗。病人服务的临床护理部分是一个高质量、随时可用的医疗和心理社会护理系统，以满足病人的需求。我们的多学科方法整合了医疗亚专家，社会工作者，咨询师，心理学家和护士的技能，以满足患者和家庭的需求。该项目中的大多数儿科患者出生在大辛辛那提地区，并通过新生儿筛查项目进行识别。辛辛那提综合镰状细胞 中心（CCSCC）继续在确保该地区出生的婴儿得到适当、及时的随访方面发挥领导作用。因此，在该地区出生和接受筛查的婴儿没有一个失访。临床护理部分与初级保健提供者有效合作，并强调顺利过渡到成人护理。临床护理部分涉及SCD患者的教育、职业和心理社会方面。此外，临床护理部分有助于促进可能使SCD患者受益的临床和基础研究。临床核心的具体目标是1）。为患有镰状细胞病（SCD）的儿童和成人患者提供全面护理，2）为临床和基础科学研究活动保持稳定的患者资源，并建立、维护和充分利用基础设施，为开展临床研究提供资源和支持，3）为住院医师、研究员、医科学生、护理学生提供培训机会，以及其他医疗保健专业人员，以及4）继续我们与社区和医疗中心的初级保健医生已经建立的合作关系， 确保所有镰状细胞病患者都能从综合计划中获益，无论他们参加的是哪种管理式护理计划。