GH Sergievsky Center, Columbia University, New York, NY, United States.
Epilepsy Res. 2012 Aug;101(1-2):122-8. doi: 10.1016/j.eplepsyres.2012.03.011. Epub 2012 Apr 2.
Virtually nothing has been published about recruitment of adults with sporadic temporal lobe epilepsy (TLE) for genetic studies. We examined eligibility, recruitment, participation rates, and reasons for exclusion in a genetic study of TLE. Participants with non-acquired TLE with onset ≤35 were recruited through review of records and screening of incoming patients at Columbia University Medical Center (CUMC). Eligible patients were asked to participate in an interview about seizures and give a blood sample for DNA extraction. Medical records were sought for each participant. Of 2974 patients screened 252 (8.5%) were eligible, and 40 (15.9% of eligible) participated. Leading reasons for ineligibility included an antecedent cause of epilepsy, syndrome other than TLE, and seizure onset after age 35. Those declining participation cited concerns about confidentiality, lack of compensation, and fear of phlebotomy. Although TLE is common and patients were recruited from a major surgical epilepsy center, a small proportion of potential participants participated. Large numbers need to be screened to reach the target sample size. Obtaining permission from treating physicians to contact their patients directly can improve recruitment. Saliva DNA collection, monetary incentives and patient education can improve participation. This information can facilitate study design in epilepsy genetics.
几乎没有发表过关于招募散发性颞叶癫痫 (TLE) 成人参与遗传研究的文章。我们研究了 TLE 遗传研究中的合格性、招募、参与率和排除原因。通过哥伦比亚大学医学中心 (CUMC) 的记录审查和新入院患者的筛查，招募了发病年龄≤35 岁的非获得性 TLE 患者。合格的患者被要求参加有关癫痫发作的访谈，并提供用于 DNA 提取的血样。为每位参与者寻找医疗记录。在筛查的 2974 名患者中，有 252 名（8.5%）符合条件，有 40 名（符合条件者的 15.9%）参与。不合格的主要原因包括癫痫的前驱病因、TLE 以外的综合征和 35 岁后发病。拒绝参与的人表示担心保密、缺乏补偿以及害怕采血。尽管 TLE 很常见，且患者是从主要的手术癫痫中心招募的，但只有一小部分潜在参与者参与。需要大量筛选才能达到目标样本量。获得治疗医生的许可，直接联系他们的患者，可以改善招募情况。唾液 DNA 采集、金钱奖励和患者教育可以提高参与度。这些信息可以促进癫痫遗传学的研究设计。
