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Conducting behavioural science research in parallel to clinical research will ensure that risk-adapted screening is understood and accepted by the population that it aims to serve.Parents of children with genetically determined leukoencephalopathies play a major role in their children's health care. Because of the COVID-19 pandemic, many health care services were suspended, delayed or delivered remotely with telemedicine. We sought to explore the experience of parents of children with genetically determined leukoencephalopathies during t