Fig. Staff members discussing recruitment at KEMRI.
The NeuroDev study is jointly led out of five institutions. The leading institutions are 1) the KEMRI-Wellcome Trust Research Programme (Kilifi, Kenya); 2) Oxford University; 3) the Stanley Center for Psychiatric Research at the Broad Institute (Cambridge, MA and USA); 4) the University of Cape Town (South Africa) and 5) Aga Khan University (Nairobi, Kenya). Parents and children are recruited into the study from hospitals and schools in the three African sites:
Epilepsy and Neurodevelopmental clinics at KEMRI Wellcome Trust and Kilifi County Hospital
Special education units within schools in Kilifi counties
Pediatric clinics at Aga Khan University Hospital in Nairobi
In South Africa
Red Cross War Memorial Children’s Hospital
Each site has expertise in research on developmental differences, and there is a long history of collaboration among the teams. A structured training program [GINGER] is building skills in genetic analysis among PhD students in the African research teams.
African individuals are underrepresented in studies of child development. They are also broadly underrepresented in genetic studies. For reasons of both social equity and scientific advance, it is important that people from all around the world participate in medical research.
Participants are recruited from clinics and schools through clinician referral, community engagement, and recontact from previous research studies. In South Africa, recruitment posters are displayed in the clinical sites and recruitment flyers are handed out to patients in waiting rooms. The flyers/posters can be viewed here. Download English | Download Afrikaans | Download isiXhosa.
The target enrolment is:
• 1,800 children with developmental differences
• 1,800 typically developing children of the same age
• 2,000 parents of case children
If parents of a child with a diagnosis of Autism Spectrum Disorder, intellectual disability, or developmental differences are interested in participating in the study click here.
The research methods described here, are covered in fuller detail in the NeuroDev methods paper.
Following a nationwide lockdown in March 2020 due to the COVID-19 pandemic, NeuroDev South Africa was able to restart data collection through the implementation of a remote data capture procedure in October 2020. Interested participants are contacted and enrolled in the study telephonically, and consent to study participation by e-signing a digital copy of the consent document via their smartphones. If they do not have a smartphone, a hardcopy document is hand-delivered to their door by the study courier service together with a self-administered saliva sample collection kit. In addition, the study team can administer some of the behavioural assessments telephonically. The remaining assessments that need to be conducted in person are scheduled and completed at a later date, which is comfortable for the participant. This new design of remotely collecting data ensures limited physical contact and adherence to COVID-19 best safety practices.
In Kenya, whilst it is particularly difficult to collect data remotely in resource limited contexts as internet connectivity and postal coverage are frequently unreliable, the team has revised the project protocol, expanding capture areas to sub-counties around Kilifi (e.g. Mombasa county) and incorporating a community health volunteer strategy to ensure that we can collect data at pace with our target numbers.