ACT Form 76 Summary

Data Description

ACT Form 76 collects self-reported family history information of the ACT participants at study baseline (intake visit). This information is separated into 3 different form datasets (Form 76, 86, 87) to help with management of the data structures. A high-level overview of the content areas is shown below.

Birthplaces

(Dataset Form 76)

Participant’s state or country of birth
Participant’s biological parents’ and grandparents’ states or countries of birth

Parents, Grandparents, Siblings, and Children

(Dataset Form 86)

Year of birth
Living status, year of death, cause of death
Whether ever experienced memory problems

Memory Problem Checklist for Relatives

(Dataset Form 87)

Did memory problem last for 6 months or longer
Did it begin gradually or suddenly
How did it progress or worsen
Did it affect (interfere with) work or social functioning
Were memory problems so severe that they became unable to care for themselves
How old were they when problems with memory were first recognized
Did they ever have a stroke
Was a cause for the memory problem diagnosed by a doctor
If the memory problem was diagnosed as AD, was it confirmed by autopsy
Were they admitted to a nursing home because of these or related problems

Important Note: Form contents have changed over the years so all the above items may not be collected over the full duration of the ACT study.

Data Structure

The Form 76 dataset contains one row per participant’s baseline visit at which the study form was collected.

The Form 86 dataset contains one row per relative (parent, grandparent, sibling, child) on whom the participant reported information at their baseline visit, while the Form 87 dataset contains one row for any of those relatives that the participant reported as having had memory problems.