NHLBI TOPMed: The Jackson Heart Study (JHS)

Since there is a greater prevalence of cardiovascular disease among African Americans, the purpose of the Jackson Heart Study (JHS) is to explore the reasons for this disparity and to uncover new approaches to reduce it. The JHS is a large, community-based, observational study whose 5306 participants were recruited from among the non-institutionalized African-American adults from urban and rural areas of the three counties (Hinds, Madison, and Rankin) that make up the Jackson, MS, metropolitan statistical area (MSA). Jackson is the capital of Mississippi, the state with the largest percentage (36.3%) of African Americans in the United States.

The JHS design included participants from the Jackson ARIC study who had originally been recruited through random selection from a drivers' license registry. Approximately six months before the JHS was to begin, an amendment to the federal Driver's Privacy Protection Act was passed that changed the level of consent for public release of personal information from driver's license lists from an "opt out" to an "opt in" basis. The Mississippi Highway Patrol was no longer able to release a complete listing of all persons with driver's licenses or state identification cards, which prevented its use in the JHS. New JHS participants were chosen randomly from the Accudata America commercial listing, which provides householder name, address, zip code, phone number (if available), age group in decades, and family components. The Accudata list was deemed to provide the most complete count of households for individuals aged 55 years and older in the Jackson MSA. A structured volunteer sample was also included in which demographic cells for recruitment were designed to mirror the eligible population. Enrollment was opened to volunteers who met census-derived age, sex, and socioeconomic status (SES) eligibility criteria for the Jackson MSA.

In addition, a family component was included in the JHS. The sampling frame for the family study was a participant in any one of the ARlC, random, or volunteer samples whose family size met eligibility requirements. Eligibility included having at least two full siblings and four first degree relatives (parents, siblings, children over the age of 21) who lived in the Jackson MSA and who were willing to participate in the study. No upper age limit was placed on the family sample. Known contact information was obtained during the baseline clinic examination from the index family member with a verbal pedigree format to identify name(s), age(s), address (es), and telephone number(s). Recruitment was limited to persons 35-84 years old except in the family cohort, where those 21 years old and above were eligible. Only persons who otherwise met study criteria but were deemed to be physically or mentally incompetent by trained recruiters were excluded from study eligibility.¹

¹ Wyatt SB, Diekelmann N, Henderson F, Andrew ME, Billingsley G, Felder SH et al. A community-driven model of research participation: the Jackson Heart Study Participant Recruitment and Retention Study. Ethn Dis 2003; 13(4):438-455 (PMID: [14632263](https://www.ncbi.nlm.nih.gov/pubmed/14632263)).

鉴于非裔美国人群体中心血管疾病的患病率更高，杰克逊心脏研究（Jackson Heart Study, JHS）旨在探究这一健康差异的成因，并探索降低该差异的新路径。JHS是一项大型社区导向的观察性研究，其5306名参与者招募自构成密西西比州杰克逊都会统计区（metropolitan statistical area, MSA）的三个县（辛兹县、麦迪逊县与兰金县）内的社区居住非机构化非裔美国成年人，覆盖城市与农村区域。杰克逊是密西西比州首府，该州非裔美国人占比（36.3%）为全美各州最高。

JHS的初始设计纳入了原本通过驾照登记册随机招募的杰克逊ARIC研究参与者。在JHS启动前约六个月，联邦《驾驶员隐私保护法》的修正案获得通过，将驾照名单个人信息公开的同意级别从“退出式同意”调整为“选择式同意”。密西西比州公路巡警不再能够发布所有持驾照者或州身份证持有者的完整名单，这使得该名单无法用于JHS的招募流程。新的JHS参与者转而从Accudata America商业名录中随机选取，该名录提供户主姓名、地址、邮政编码、电话号码（如可获取）、十年段年龄组以及家庭构成信息。经评估，Accudata名录能够最完整地覆盖杰克逊都会统计区内55岁及以上人群的家庭样本。此外，研究还纳入了结构化志愿样本，其招募的人口统计学单元格设计旨在匹配符合条件的总体人群。研究向符合杰克逊都会统计区人口普查衍生的年龄、性别与社会经济地位（socioeconomic status, SES）资格标准的志愿者开放招募。

此外，JHS还增设了家庭研究组分。家庭研究的抽样框架为来自ARIC、随机或志愿样本的参与者，且其家庭规模需符合入组要求。入组标准包括至少拥有2名全同胞以及4名一级亲属（父母、同胞、21岁以上的子女），且这些亲属均居住在杰克逊都会统计区内并愿意参与研究。家庭样本未设置年龄上限。在基线临床检查期间，通过索引家庭成员的口头家系信息获取已知的联系方式，以确认亲属姓名、年龄、地址及电话号码。招募对象限定为35-84岁人群，但家庭队列除外，该队列中21岁及以上人群均可入组。仅那些符合研究基本标准，但经培训合格的招募人员评估为身体或精神无行为能力者，被排除在研究资格之外。¹

¹ Wyatt SB, Diekelmann N, Henderson F, Andrew ME, Billingsley G, Felder SH 等. 以社区为导向的研究参与模式：杰克逊心脏研究参与者招募与留存研究. 民族病学杂志, 2003; 13(4):438-455（PMID: [14632263](https://www.ncbi.nlm.nih.gov/pubmed/14632263)）.