CONSENT-ASL Toolkit for Deaf and Hard of Hearing People

针对聋哑人和听力障碍人士的 CONSENT-ASL 工具包

• 批准号: 10682412
• 负责人: Raja S. Kushalnagar
• 金额: $ 13.79万
• 依托单位: GALLAUDET UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-01 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10682412
• 关键词: Access to Information; Adoption; American Sign Language; Anecdotes; Bioethics Consultants; Clinical Data; Clinical Research; Clinical Trials; Communication; Communities; Consent; Data; Decision Making; Doctor of Philosophy; Eligibility Determination; Exclusion; Focus Groups; Funding; Goals; Health; Health Personnel; Health Promotion; Healthcare; Hearing; Information Dissemination; Information Resources; Informed Consent; Institution; Institutional Review Boards; Knowledge; Language; Leadership; Linguistics; Link; Maintenance; Oral; Outcome; Participant; Patient-Centered Care; Patients; Personal Satisfaction; Persons; Population; Principal Investigator; Process; Qualifying; Reach, Effectiveness, Adoption, Implementation, and Maintenance; Reduce health disparities; Reporting; Research; Research Personnel; Research Support; Resources; Risk; Site; Strategic Planning; Surveys; Testing; Training; Underrepresented Populations; Underserved Population; United States National Institutes of Health; United States National Library of Medicine; Universities; Work; access disparities; deaf; design; disparity reduction; dissemination strategy; experience; hard of hearing; health equity; health literacy; hearing impairment; high risk population; improved; improved outcome; medically underserved; member; mobile application; poor health outcome; prospective; public health relevance; research study; usability; user centered design; web site

There is a critical need for a user-centered, accessible informed consent toolkit. The purpose of this G08 application is to develop and deploy an accessible informed consent app- based toolkit to support two target audiences: 1) deaf patients who wish to participate in research studies and 2) clinical research coordinators (CRCs) and principal investigators (PIs) who do not have the resources to make their informed consent materials accessible to prospective participants who are deaf. This project is low-risk and high in impact because it builds on the leadership team’s research with the medically underserved Deaf community. Knowledge gained from the proposed activities will therefore have great potential to bring useful, usable resources to deaf signers and who wish to participate in research or clinical trials. Finally, the resulting resources will fill a gap prioritized in Goals 1&2 of NLM's Strategic Plan Goals because the proposed work will support research through information dissemination strategies that enhance information delivery of research participation and informed consent to underserved, overlooked groups such as deaf people who use ASL.

对于以用户为中心的，可访问的知情同意工具包，迫切需要。这 该G08应用程序的目的是开发和部署可访问的知情同意应用程序 - 支持两个目标受众的基于工具包：1）希望参加的聋人患者 研究和2）临床研究协调员（CRC）和主要研究人员（PIS） 谁没有资源使他们的知情同意材料可以访问 聋哑的潜在参与者。 该项目是低风险且影响很高，因为它建立在领导团队的基础上 对医学上服务不足的聋人社区的研究。从 因此，拟议的活动将具有巨大的潜力，可以为聋人带来有用的可用资源 签名者以及希望参加研究或临床试验的人。 最后，最终的资源将填补NLM战略目标1和2优先级的空白 计划目标是因为拟议的工作将通过信息支持研究 传播策略，以增强信息提供的研究参与和 知情同意，即服务不足的，被忽视的团体，例如使用ASL的聋人。

项目成果

Barriers and facilitators to the inclusion of deaf people in clinical trials.

将聋人纳入临床试验的障碍和促进因素。

• DOI: 10.1177/17407745231177376
• 发表时间: 2023
• 期刊: Clinical trials (London, England)
• 作者: Kushalnagar,Poorna;Nicolarakis,Onudeah;Mirus,Gene;Anderson,Melissa;Burke,Teresa;Kushalnagar,Raja
• 通讯作者: Kushalnagar,Raja