CORE--PEDIATRIC SICKLE CELL PROGRAM

核心--儿科镰状细胞项目

• 批准号: 6667543
• 负责人: KAREN A KALINYAK
• 金额: $ 22.86万
• 依托单位: CINCINNATI CHILDRENS HOSP MED CTR
• 依托单位国家: 美国
• 财政年份: 2002
• 资助国家: 美国
• 起止时间: 2002-04-01 至 2003-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6667543
• 关键词: African American; adolescence (12-20); behavioral /social science research tag; biomedical facility; child (0-11); clinical research; comprehensive care; human subject; pediatrics; sickle cell anemia

The pediatric clinical core provides comprehensive care for 235 children, teenagers, and young adults with sickle cell disease (SCD) in 222 families . The pediatric 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 multidisciplinary 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 patients in this program are born in the Greater Cincinnati area and are identified by newborn screening. 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. No baby in the Cincinnati area who was identified by newborn screening as having a sickle hemoglobinopathy has been lost to follow-up. The clinical care component works effectively with the primary care provider to coordinate care with a minimum of redundancy and maximum of benefits. The clinical care component emphasizes a smooth transition into adult care and addresses problems of education, vocational, and psychosocial aspects of this chronic disease. The clinical care component also serves to promote both clinical and basis research that may benefit patients with SCD. The specific aims of the Pediatric Clinical Core are 1) to provide comprehensive care to patients and families of patients enrolled in the pediatric clinic; 2) to adapt the traditional concept of comprehensive care to the present day reality of managed care by which patient enrolled in various managed health care plans continue to receive the benefits of a comprehensive program; 3) to provide training opportunities for residents, fellows, medical students, nursing students genetic counseling students, as well as other health care professionals; 4) to develop a transition clinic for adolescent patients as part of a transition program the goals of which are to help adolescents make a successful transition to an adult comprehensive care program; and 5) to maintain a stable resource of patients for the clinical and basic science research activities, and to provide clinical data for those projects.

儿科临床核心为235名儿童提供全面护理， 222 个家庭中患有镰状细胞病 (SCD) 的青少年和年轻人 。患者服务的儿科临床护理部分是一个系统 高质量、随时可用的医疗和社会心理护理 满足患者的需求。我们的多学科方法整合了 医学专科医生、社会工作者、辅导员的技能， 心理学家和护士来满足患者和家人的需求。这 该计划中的大多数患者出生在大 辛辛那提地区并通过新生儿筛查确定。辛辛那提 综合镰状细胞中心 (CCSCC) 继续保持领先地位 在确保对在此出生的婴儿进行适当和及时的随访方面发挥作用 区域。辛辛那提地区没有婴儿被新生儿识别 因患有镰状血红蛋白病而进行的筛查已失访。 临床护理部分与初级护理有效配合 提供者以最小的冗余和最大的冗余来协调护理 好处。临床护理部分强调平稳过渡到 成人护理并解决教育、职业和 这种慢性疾病的心理社会方面。临床护理部分 也有助于促进可能受益的临床和基础研究 患有 SCD 的患者。 儿科临床核心的具体目标是 1) 提供 为参加该项目的患者和患者家属提供全面护理 儿科诊所； 2）适应传统的综合观念 护理对当今患者登记的管理式护理的现实 在各种管理医疗保健计划中继续获得以下好处 全面的计划； 3）提供培训机会 住院医师、研究员、医学生、护理生遗传咨询 学生以及其他医疗保健专业人员； 4）开发一个 作为过渡计划的一部分，为青少年患者提供过渡诊所 其目标是帮助青少年成功过渡到 成人综合护理计划； 5）维持稳定的资源 患者进行临床和基础科学研究活动，并 为这些项目提供临床数据。