基思·诺里斯, MD, was in his 20s when both of his parents died from heart-related disease.
It was a seminal moment in a career focused in part on equity in 临床试验 – studies involving patients that evaluate the effectiveness and safety of medicines, 预防或治疗疾病的设备或生活方式.
“I wondered whether my parents could have benefitted had more 临床试验 during that time involved patients who were Black,博士说。. Norris.
When researchers are trying to determine if a new medication is effective, 像血压这样的数据点可以作为强有力的信息路标, Dr. 诺里斯说,. But when it comes to how race and ethnicity impact results, the data may not be as obvious.
“We should be more cautious against drawing conclusions from studies looking at small groups,” says Dr. Norris, a distinguished professor of medicine at the David Geffen 医学院 at UCLA. “Just because a medication shows promise for one racial or ethnic group doesn’t guarantee the same outcome for everyone.”
Dr. 诺里斯和 Arleen布朗, MD, 也是DGSOM的医学教授, are leading work to address representation in medical research and to ensure equitable healthcare. 他们共同指导 皇冠hga025大学洛杉矶分校临床与转化科学研究所 皇冠hga020电脑版参与研究计划, 哪些因素支持研究人员设计更具包容性的临床试验.
CTSI提供支援 对研究人员来说，通过大量的投资是成功的关键, 比如弄清楚如何让一个农村皇冠hga020电脑版接入互联网. Experts can also help with regulatory and other process-related challenges.
There are also service-level activities, such the community engagement research program led by Dr. Brown. Members work with investigators to help them build trust and minimize potential roadblocks for participation in 临床试验.
“皇冠hga020电脑版 education and proactive partnerships are critical to making medical research more diverse and developing therapies that are effective for everyone,” Dr. 布朗说.
目前,博士. 布朗博士. 诺里斯是领导团队的一员 临床试验多样性科学 作为美国心脏协会的合作伙伴.
与夏威夷大学的同事于2022年推出, Manoa, 和华盛顿州立大学, 该项目专门研究夏威夷原住民, 印第安人和其他少数民族. Researchers use messaging strategies such as texts and videos to encourage people to participate in studies about heart health.
临床试验多样性的障碍
As a large academic health system with a history of translating research discoveries into 医学突破，皇冠hga025大学洛杉矶分校健康中心从事各种各样的 临床试验 -任何时候都有1500人.
文化, social and socioeconomic factors continue to influence the lack of diversity in 临床试验 past and present, says Dr. Norris.
“从代表性不足的人群中获得参与者,诺里斯说, “you have to consider what the reasons are as to why they may not be participating.”
其中一些原因属于健康的社会决定因素, 比如缺乏交通和儿童保育. 其他障碍是对研究人员的不信任, lack of knowledge about research processes and fear of potential negative effects or risk.
Dr. Norris suggests overcoming these barriers using tactics such as establishing diverse research teams and dedicating increased resources to directly address patient barriers. The current project with the AHA explores hula dancing activities and nutrition for heart and metabolism-related issues such as high blood pressure or diabetes, 睡眠呼吸暂停的研究, 旨在通过纳入年龄等因素来增加代表性, 性别和特定健康状况.
皇冠hga025大学洛杉矶分校的其他研究人员正在探索使研究多样化的方法:
- 2024年7月开始, an interdisciplinary team will study how tests used to determine eligibility for new drugs like Lecanemab to treat Alzheimer’s Disease may vary in different racial and ethnic groups. They then plan to develop educational tools for patients and providers that highlight the differences, 最终目标是调整每个群体的护理. 神经科医师张忠明, MD, PhD, 综合医学和生理学研究员凯西·德特斯说, 生物伦理学家Nanibaa ' Garrison博士, received a four-year Alzheimer’s disease Research Award grant from the California Department Public Health.
- Jennifer Adrissi，医学博士，神经病学助理教授 制定问卷调查 that will include questions about factors that are known to influence the likelihood that a Black individual will sign up for a clinical trial. The assessment will ultimately help Parkinson’s disease researchers evaluate and improve their recruitment of Black participants in 临床试验.
“It’s important for teams going into a community to provide the background and lay the foundation with patient advocates, 领导和组织对临床试验的认识, 为什么它们很重要, 什么时候对病人有益(或无益), why we need to do a given trial and why UCLA is a trustworthy partner in doing 临床试验,” says 乔Naeim, MD, associate dean for clinical research for the David Geffen 医学院 at UCLA. Their support can help addresses obstacles tied to recruiting and retaining volunteers for 临床试验.
长期目标，Dr. 诺里斯说,, is for the right treatment to be delivered to the right person at the right time, 适用于所有人群.
研究是一个集体的努力
While health care professionals and institutions have made strides to diversify clinical research, progress has been slow largely because of systemic issues and lack of investments, Dr. 诺里斯说,. Nonetheless, he and colleagues are seeing positive change resulting from increased awareness and 政策转变 围绕研究的多样性.
他说:“对话本身就是一种进步。.
美国大学的种族和族裔报告与公平入学.S. 临床试验，虽然历史上很差， 改善了 近年来为所有群体.
走向包容的关键在于参与 皇冠hga020电脑版领袖和组织 在研究项目中, 美国国家科学院建议, 工程, 和医学，最近有一个研究小组，包括博士. 布朗仔细研究一下这个问题.
例如, 在招聘, a person may be faced with an on-the-spot decision about their participation. Ideally, they will have the necessary information based on what they heard from trusted community leaders or learned themselves, to give them peace of mind regarding past negative health care experiences or historical concerns.
这是一种道德和科学的紧迫性, he says, 增加临床试验的多样性, 与皇冠hga020电脑版建立信任，促进公平. 但我们的工作是向我们的皇冠hga020电脑版证明我们是值得信赖的，他说.
“We must continue to address each trial and community barrier to optimize a representative group of participants,诺里斯说. “At the end of the day, all communities benefit from advancements in quality medical research.”
