MANAGEMENT AND RESEARCH SUPPORT FOR THE GENETIC AND RARE DISEASES (GARD) INFORMATION CENTER AND RELATED PROGRAMS.

遗传和罕见疾病 (GARD) 信息中心及相关计划的管理和研究支持。

• 批准号: 10497607
• 负责人: RICHARD BALLEW
• 金额: $ 257.39万
• 依托单位: ICF, INC., LLC
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-07-29 至 2022-07-28
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10497607
• 关键词: Advocacy; Clinical Research; Communities; Disease; Family; Genetic Diseases; Hand; Health Professional; Information Centers; Information Specialists; National Human Genome Research Institute; Nurses; Occupational Therapist; Patients; Physicians; Rare Diseases; Research; Research Support; Resources; Scientist; Social Workers; United States National Institutes of Health; Work; Writing; experience; genetic counselor; member; physical therapist; programs; rare genetic disorder; teacher; virtual

The Genetic and Rare Diseases Information Center (GARD) was created in 2002 by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases Research (ORDR) - two agencies at the National Institutes of Health (NIH) - to help people find useful information about genetic and rare diseases. GARD provides immediate, virtually round-the-clock access to experienced information specialists who can furnish current and accurate information - in both English and Spanish - about genetic and rare diseases. So far, GARD has responded to over 15,500 inquiries on rare and genetic diseases. Requests come not only from patients and their families, but also from physicians, nurses and other health-care professionals. GARD also has proved useful to genetic counselors, occupational and physical therapists, social workers, and teachers who work with people with a genetic or rare disease. Even scientists who are studying a genetic or rare disease and who need information for their research have contacted GARD, as have people who are taking part in a clinical study. Community leaders looking to help people find resources for those with genetic or rare diseases and advocacy groups who want up-to-date disease information for their members have contacted GARD. And members of the media who are writing stories about genetic or rare diseases have found the information GARD has on hand useful, accurate and complete

遗传和罕见疾病信息中心（GARD）由美国国家人类基因组研究所（NHGRI）和罕见疾病研究办公室（ORR）于2002年创建-美国国立卫生研究院（NIH）的两个机构-帮助人们找到有关遗传和罕见疾病的有用信息。GARD提供即时的、几乎全天候的访问经验丰富的信息专家，他们可以提供关于遗传和罕见疾病的最新和准确的信息-英语和西班牙语。到目前为止，GARD已经回答了15，500多个关于罕见和遗传疾病的询问。请求不仅来自患者及其家属，也来自医生、护士和其他卫生保健专业人员。GARD也被证明对遗传咨询师、职业和物理治疗师、社会工作者和与遗传或罕见疾病患者一起工作的教师有用。即使是正在研究遗传或罕见疾病并需要研究信息的科学家也会联系GARD，参与临床研究的人也会联系GARD。社区领导人希望帮助人们为那些患有遗传或罕见疾病的人找到资源，而倡导团体希望为其成员提供最新的疾病信息，他们已经联系了GARD。正在撰写有关遗传或罕见疾病报道的媒体成员发现GARD手头的信息有用，准确和完整