Amish Connectome Project

Project Overview & Components

Data being collected

  • Standard HCP demographics
  • Imaging: The ACP will collect imaging data for structural, functional (resting state and task) and diffusion using a Siemens Trio 32 channel scanner.  In addition to the HCP behavioral and demographic data collection, psychiatric diagnosis, broad symptom and RDoC dimensional assessments of behavior and cognition will be collected during one site visit.
  • Clinical:  Whole genome data will be obtained for all participants through next generation sequencing and family-based imputation of GWAS data.
  • Behavioral: NIH Toolbox, diagnostics using SCID, specific tasks related to RDoCs, genotypes. Some of these data will be resided in dbGaP and NIMH RDoCs warehouse.

Cohort Description

The study consists of 450 participants ranging in age from 18-85. This is a pedigree-based recruitment.  Many of the pedigrees are substantial in size which will require multiple years to complete recruitment. 

Data Release Plans

Most of the ACP release will occur at the end of the project for several reasons:  (1) Releasing data in different batches from the same pedigree creates a fragmented user experience, (2) Incomplete pedigrees may not be as scientifically valid, and (3) Releasing data earlier may also lead to potentially conflicting findings between batches.

  • The first data release includes 100 participants in completed pedigrees.
  • The second data release includes 450 participants.

Keywords: Amish, Research Domain Criteria, phenotyping, behavioral, psychiatric diagnosis, mental disorders, genome.