RECRUITMENT
Fig. Staff members discussing recruitment at KEMRI.
Site Selection
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:
In Kenya
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Epilepsy and Neurodevelopmental clinics at KEMRI Wellcome Trust and Kilifi County Hospital
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Special education units within schools in Kilifi counties
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Pediatric clinics at Aga Khan University Hospital in Nairobi
In South Africa
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Red Cross War Memorial Children’s Hospital
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Tygerberg 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.
Why Africa?
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.
Recruitment
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.