The Delaware Comprehensive Sickle Cell Research Center

特拉华州综合镰状细胞研究中心

• 批准号: 10664915
• 负责人: David C Brousseau
• 金额: $ 209万
• 依托单位: ALFRED I. DU PONT HOSP FOR CHILDREN
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-08-01 至 2026-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10664915
• 关键词: Achievement; Address; Adult; Affect; Area; Basic Science; Biological; Biological Markers; Biomedical Research; Caring; Centers of Research Excellence; Child; Child Health; Chronic; Chronic Disease; Clinical; Clinical Data; Clinical Research; Clinical Sciences; Clinical Trials; Collaborations; Communities; Comprehensive Health Care; Delaware; Disease; Disparity; Ensure; Foundations; Funding; Future; Growth; Health; Health Personnel; Healthcare Systems; Individual; Inequity; Informatics; Institution; Interdisciplinary Study; Intervention; Investigation; Laboratory Research; Leadership; Maintenance; Medical; Mentors; Modeling; Patients; Phase; Positioning Attribute; Psychological Factors; Research; Research Infrastructure; Research Methodology; Research Personnel; Research Project Grants; Resource Development; Resources; Scientist; Secure; Self Efficacy; Senior Scientist; Severity of illness; Sickle Cell; Sickle Cell Anemia; Societal Factors; System; Training; Translational Research; Treatment Efficacy; barrier to care; career; clinical care; clinical trial enrollment; community engagement; comorbidity; cost effective; ethnic minority; health care disparity; improved; innovation; interest; medical specialties; multidisciplinary; operation; programs; psychosocial; racial minority; racism; recruit; routine care; social stigma; success; tool; translational research program; underserved community; young adult

PROJECT SUMMARY The Delaware Sickle Cell Disease (SCD) COBRE is a multidisciplinary center of biomedical research excellence with a thematic focus on translational, clinical and psychosocial research in sickle cell disease. Building on a biomedical and clinical research infrastructure developed through COBRE Phase 1 funding, and the successful recruitment of several promising early career investigators, the DE SCD COBRE is submitting a competitive renewal application to continue capacity-building and innovative research. In Phase 1, the DE SCD COBRE contributed to more than $13 million in new funding in Delaware. Integration of the DE SCD COBRE within the Delaware IDeA network continues to be integral to both the successful recruitment and training of early career investigators, as well as pilot funding. In this Phase 2 COBRE submission, the DE SCD COBRE presents a new mentoring model, a new pilot funding program, a new Clinical Research and Data Informatics Core and four new target investigators. Each of these new additions builds on success in Phase 1 and is responsive to areas of strength and growth. Additionally, we developing a multidisciplinary and systematic approach to study the influence of stigma and racism within communities and the healthcare system on the efficacy of both routine health maintenance and targeted interventions in patients with SCD. We will evaluate biomarkers for severe SCD co-morbidities (Project 4), engage our patients and community to take stock of barriers to routine care (Project 1, 2, and 3) and explore tools to improve self-efficacy among health care providers (Project 1) and patients (Project 1, 2, and 3), while simultaneously confronting how racism impacts the health of children and young adults (Project 1, 2, and 3). Central to all aspects of the Delaware Sickle Cell Research Program is the overarching Center hypothesis that effective management of a common, congenital, multi-system disease requires comprehensive investigations spanning the biological, medical, psychological, and societal factors that impact both the severity of the disease and the efficacy of interventions.

项目概要 特拉华州镰状细胞病 (SCD) COBRE 是一个多学科生物医学研究中心 卓越的主题专注于镰状细胞病的转化、临床和心理社会研究。 建立在通过 COBRE 第一阶段资助开发的生物医学和临床研究基础设施的基础上，以及 成功招募了几位有前途的早期职业调查员，DE SCD COBRE 正在提交一份 竞争性更新申请，以继续能力建设和创新研究。在第一阶段，DE SCD COBRE 在特拉华州筹集了超过 1300 万美元的新资金。 DE SCD COBRE 的集成 特拉华州 IDeA 网络内的培训仍然是成功招募和培训 早期职业调查员以及试点资金。在此第 2 阶段 COBRE 提交中，DE SCD COBRE 提出了新的指导模式、新的试点资助计划、新的临床研究和数据信息学 核心和四名新目标调查员。这些新增内容中的每一个都建立在第一阶段的成功基础上，并且 对优势和成长领域做出反应。此外，我们还开发了多学科和系统的 研究社区和医疗保健系统内的耻辱和种族主义对 常规健康维护和针对性干预对 SCD 患者的疗效。我们将评估 严重 SCD 合并症的生物标志物（项目 4），让我们的患者和社区评估 常规护理的障碍（项目 1、2 和 3）并探索提高医疗保健自我效能的工具 提供者（项目 1）和患者（项目 1、2 和 3），同时面对种族主义的影响 儿童和青少年的健康（项目 1、2 和 3）。特拉华镰状细胞各个方面的核心 研究计划是总体中心假设，即有效管理一个共同的、 先天性、多系统疾病需要跨生物学、医学、 影响疾病严重程度和干预措施效果的心理和社会因素。

项目成果

Family-centered communication in pediatric sickle cell disease.

小儿镰状细胞病以家庭为中心的沟通。

• DOI: 10.1002/pbc.30016
• 发表时间: 2022
• 期刊: Pediatric blood & cancer
• 影响因子: 3.2
• 作者: Carlson,MeganM;Bear,Benjamin;Alderfer,MelissaA;Schultz,CorinnaL;Monroe,DonnaPennington;Crosby,LoriE;Hildenbrand,AimeeK
• 通讯作者: Hildenbrand,AimeeK

A Consensus Model of Homology-Directed Repair Initiated by CRISPR/Cas Activity.

• DOI: 10.3390/ijms22083834
• 发表时间: 2021-04-07
• 期刊: International journal of molecular sciences
• 影响因子: 5.6
• 作者: Bloh K;Rivera-Torres N
• 通讯作者: Rivera-Torres N

Family Resilience From the Perspective of Caregivers of Youth With Sickle Cell Disease.

• DOI: 10.1097/mph.0000000000001682
• 发表时间: 2020-03
• 期刊: Journal of pediatric hematology/oncology
• 作者: Reader SK;Pantaleao A;Keeler CN;Ruppe NM;Kazak AE;Rash-Ellis DL;Wadman J;Miller RE;Deatrick JA
• 通讯作者: Deatrick JA

Implementation of a learning healthcare system for sickle cell disease.

• DOI: 10.1093/jamiaopen/ooaa024
• 发表时间: 2020-10
• 期刊: JAMIA open
• 影响因子: 2.1
• 作者: Miller R;Coyne E;Crowgey EL;Eckrich D;Myers JC;Villanueva R;Wadman J;Jacobs-Allen S;Gresh R;Volchenboum SL;Kolb EA
• 通讯作者: Kolb EA

Systematic Review: Pain and Emotional Functioning in Pediatric Sickle Cell Disease.

系统评价：小儿镰状细胞病的疼痛和情绪功能。

• DOI: 10.1007/s10880-019-09647-x
• 发表时间: 2020
• 期刊: Journal of clinical psychology in medical settings
• 影响因子: 2.2
• 作者: Reader,StevenK;Rockman,LauraM;Okonak,KatherineM;Ruppe,NicoleM;Keeler,ColleenN;Kazak,AnneE
• 通讯作者: Kazak,AnneE