Demands on families with Neuronopathic Gaucher Disease


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Elin Davies-Pope is clinical research nurse at Great Ormond Street Hospital and is responsible for the Zavesca trial with Type 3 children. She spoke about the demands on families during the trial at the Family Conference.


'The demands and complexity of the neuronopathic Gaucher disease trial along with managing continued care, home enzyme replacement therapy infusions, school statementing and attending routine clinic appointments have proved to be particularly stressful for all families.

'As the Clinical Research Nurse on the trial, there was a need to work beyond my identified job remit in order to support the demands of the families. 'Twelve British children were screened as part of the clinical trial. Ten out the 12 were known patients to Dr Vellodi before the start of the study.

'As part of the trial, I have regular contact with the families. This involves monthly phone calls and three monthly visits. During the trial, many families utilise the link with me to support non-clinical trial needs.


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Source: Gauchers News May 2005.
Copyright © Gauchers Association 2005.