在唐氏综合征调查中,成功 (和失败) 的招聘方法和参与者损失
Mikayla Shaffer1, John Patrick T Co1, Karen Donelan1
1Mikayla Shaffer, Massachusetts General Hospital, John Patrick T. Co, Harvard Medical School, Karen Donelan, Brandeis University and Massachusetts General Hospital, Brian G. Skotko, Massachusetts General Hospital and Harvard Medical School, Amy Torres, Massachusetts General Hospital, Jonathan P. Winickoff, Massachusetts General Hospital and Harvard Medical School, and Stephanie L. Santoro, Massachusetts General Hospital and Harvard Medical School.
American journal on intellectual and developmental disabilities
|February 25, 2025
概括
为患有唐氏综合征 (DS) 的人招募护理人员需要战略性的外展. 在这种遗传综合征研究中,关联组织和注册机构在获得有效的调查答案方面被证明是最有效的.
科学领域:
- 医学研究方法论医学研究方法论.
- 遗传学 是一个遗传学.
- 护理人员研究研究.
背景情况:
- 对罕见遗传综合征的调查研究提出了独特的招聘挑战.
- 有效的参与者招募对于唐氏综合征 (DS) 研究中的有效数据至关重要.
研究的目的:
- 详细说明招聘策略,调查唐氏综合征 (DS) 患者的护理人员.
- 确定成功的招聘道和关于受访者有效性的经验教训.
主要方法:
- 电子调查分发给年龄在0-21岁的人的护理人员.
- 使用多个招聘来源,包括DS关联组织,DS-Connect®注册表和诊所外展.
- 实施数据选以识别和最小化无效受访者,包括机器人和欺诈者.
主要成果:
- 在2023-2024年期间收集了542个有效的,完整的调查答案.
- DS附属组织,DS-Connect®注册表和DS诊所外展是最成功的招聘方法.
- 在1569名符合条件的个人中,730人 (46.5%) 同意参与,并注意到残疾受访者的挑战.
结论:
- 通过已建立的DS网络进行有针对性的推广,对于护理人员的招聘是有效的.
- 研究人员必须实施强有力的措施,以减轻遗传综合征调查研究中的残疾受访者.
- 学到的教训可以为未来的调查研究提供信息,以低发病率的医疗条件.
更多相关视频
相关概念视频
Longitudinal Research
11.8K
Sometimes we want to see how people change over time, as in studies of human development and lifespan. When we test the same group of individuals repeatedly over an extended period of time, we are conducting longitudinal research. Longitudinal research is a research design in which data-gathering is administered repeatedly over an extended period of time. For example, we may survey a group of individuals about their dietary habits at age 20, retest them a decade later at age 30, and then again...
11.8K
Surveys
14.7K
Often, psychologists develop surveys as a means of gathering data. Surveys are lists of questions to be answered by research participants, and can be delivered as paper-and-pencil questionnaires, administered electronically, or conducted verbally. Generally, the survey itself can be completed in a short time, and the ease of administering a survey makes it easy to collect data from a large number of people.
14.7K
Longitudinal Studies
116
Longitudinal studies are also widely used in other medical and social science fields. For instance, in cardiovascular research, they can monitor patients' health over decades to identify risk factors for heart disease, such as high cholesterol or smoking, and evaluate the long-term effectiveness of preventive measures. Similarly, in mental health studies, researchers might follow individuals from adolescence into adulthood to understand the development and progression of conditions like...
116
Censoring Survival Data
55
Survival analysis is a statistical method used to analyze time-to-event data, often employed in fields such as medicine, engineering, and social sciences. One of the key challenges in survival analysis is dealing with incomplete data, a phenomenon known as "censoring." Censoring occurs when the event of interest (such as death, relapse, or system failure) has not occurred for some individuals by the end of the study period or is otherwise unobservable, and it might have many different...
55


