Fig. Katini Mwangasha, Assistant Research Officer presenting a poster about the broad goals of NeuroDev

Sample and data sharing

All blood samples and data will be de-identified (names and other identifying features removed) and shared publicly with researchers internationally to maximize the discoveries that come of this research. Our data sharing plan was modeled after the standards of the H3Africa Ethical Guidelines for Genomic Research

Storage and sharing of biological samples

Some whole blood samples will be stored in Kenya and South Africa for local analysis. Blood will also be stored in the biobank of the National Institute for Mental Health in the United States, which is located at Rutgers University (RGR). A small portion of DNA will be sent to the Broad Institute in Cambridge, MA for genetic processing. The remaining DNA will be stored (as de-identified samples)  at the NIMH-RGR and will be available to the scientific community for approved research use. A portion of the blood sample from Kenyan participants will be available onsite in the KEMRI-Wellcome Trust laboratory for local analysis. For those who agree in South Africa, immortalized cell lines will be created from the blood sample. A cell line is a renewable source of DNA for future scientific use. The South African cell lines will be available for all qualified researchers to study around the world. 

Storage and sharing of data

Most data will be shared on controlled-access databases. A controlled-access database requires that a researcher apply to a data access committee in order to view or use the data. Examples of controlled-access databases, and institutions with which NeuroDev will share information, are the Centers for Mendelian Genomics,  dbGaP, MatchMaker Exchange and Face2Gene. Some data, mostly summary statistics, will be shared through open-access databases. An open-access database is available to any interested member of the public, usually via a website. Examples of open-access databases are GnomAD; the Atlas of Human Malformation Syndromes in Diverse Populations, and ClinVar.


An open sharing policy allows information sharing between scientists across many platforms and ensures researchers have the most up to date and complete tools for the study.  A full list of our data sharing plans can be found in the table below.



All the blood samples collected for NeuroDev will be genotyped and exome sequenced. One primary goal of our analysis is to identify genetic changes that cause developmental differences (particularly ASD, ID, and ADHD).

The research methods described here, are covered in fuller detail in the NeuroDev methods paper.