Recruitment of families for genetic studies of epilepsy
Recruitment of families for genetic studies of epilepsy
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DOI：
10.1111/j.0013-9580.2005.41904.x
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发表时间：
2005-02-01
期刊：
影响因子：
5.6
通讯作者：
Barker-Cummings, C
中科院分区：
文献类型：
--
作者：
Ottman, R;Berenson, K;Barker-Cummings, C
目的：对包含多个受影响个体的家庭的研究对于癫痫的遗传研究是必不可少的，但实际上没有任何关于识别和招募家庭或预期参与率的方法的报道。在这里，我们描述了用于数据收集的遗传连锁研究的策略，提供新的study.Methods的有效设计的指导方针：潜在的合格的家庭从私人医生，诊所，和自我转诊确定。参与率进行了检查，在每一步的招聘过程中，根据确定的来源，最初的接触方法，性别，和ethnication.Results：在320个潜在的符合条件的家庭确定，只有68（21%）被成功招募。在83%的家庭中建立了与索引受试者的联系，其中88%完成了资格筛选。然而，只有54%的筛选家庭被证实符合条件，其中只有54%被录取。在符合条件的家庭中，79%的指标受试者同意参加;低家庭入学率主要是由于拒绝其他家庭成员的参与，需要进行连锁分析。在招聘过程中的每一步，参与率是较高的自我介绍比在其他family.Conclusions：招聘的家庭遗传研究是劳动密集型的，许多潜在的合格的家庭可能要筛选每个家庭登记。自我推荐的家庭比通过其他方法确定的家庭更容易招募。采用标准化方法从临床环境中确定符合条件的家庭可以提高效率。
Purpose: Study of families containing multiple affected individuals is essential for genetic research on the epilepsies, yet practically nothing has been published about methods for identification and recruitment of families or expected participation rates. Here we describe the strategy used for data collection in a genetic linkage study, to provide guidelines for efficient design of new studies.Methods: Potentially eligible families were ascertained from private physicians, clinics, and self-referrals. Participation rates were examined at each step of the recruitment process, according to ascertainment source, initial contact method, gender, and ethnicity.Results: Among 320 potentially eligible families identified, only 68 (21%) were successfully enrolled. Contact was established with an index subject in 83% of families, and a screen for eligibility was completed in 88% of these. However, only 54% of screened families were confirmed to be eligible, and of these, only 54% were enrolled. In eligible families, 79% of index subjects agreed to participate; the low family enrollment rates resulted largely from refusals by other family members whose participation was needed for linkage analysis. At each step in the recruitment process, the participation rate was higher in self-referred than in other families.Conclusions: Recruitment of families for genetic studies is labor-intensive; many potentially eligible families may have to be screened for each family enrolled. Recruitment is easier with self-referred families than with those identified through other methods. The introduction of standardized methods for identification of eligible families from clinical settings can improve efficiency.