Recruitment nearly complete!

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Dr. Elin Haf Davies

Fri Mar 08 2019 09:30:00 GMT+0000 (Coordinated Universal Time)

Our Precision Medicine study in partnership with Red Cross Children’s War Memorial and University of Cape Town, South Africa is progressing well. Recruitment is now almost complete, and the majority of participants are engaging well with using the technology. Some challenges have been encountered, which is not unexpected when deploying innovative technology and supporting a cohort of families with limited resources whose children have multiple neurological disabilities, and whose care takes up a lot of time. This experience is invaluable, and as planned in this pilot study provides insight into the realities for future E-health initiatives for routine care and research in South Africa.

Some challenges have been encountered, which is not unexpected when deploying innovative technology and supporting a cohort of families with limited resources whose children have multiple neurological disabilities, and whose care takes up a lot of time. This experience is invaluable, and as planned in this pilot study provides insight into the realities for future E-health initiatives for routine care and research in South Africa. The design of the molecular study into underlying genetic aetiologies for refractory epilepsy is being finalised and is likely to use an exome sequencing with targeted analysis approach. It is hoped that the pharmacogenomic data can also be obtained from the exome data. This data together with the detailed phenotyping which includes electrophysiology and seizure semiology could provide the first link between genotype and phenotype in children with refractory epilepsy in Africa. There are new faces in the project team, including Caitlin McIntosh who is registered for an MSc working on the molecular project and Sr Nandipha Magwaca who is keeping close contact with participants in their home language and driving recruitment as her first priority. Irene Muchada is completing her pilot interviews for a detailed qualitative study interrogating the experiences and expectations of caregivers for these precision medicine initiatives. We also expect to include undergraduate medical students in the near future to work on short projects looking at some of the cultural beliefs these caregivers have about epilepsy and the quality of life of the families. At Aparito we also welcomed Dr Dimitra Blana, a data scientist who will be initiating the mHealth data analysis as soon as recruitment is complete. Collaboration across the three organizations has been very rewarding for all, and a testament to the spirit of the Newton Fund.

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