Recruiting Parents of Children with a Fatal Disease as Co-Investigators

Abstract

Information about Rett syndrome should be imparted to parents of newly diagnosed children by a physician who is familiar with the disease and the care of affected children. Symptomatic treatment should be discussed and a follow-up schedule planned. Parents should be referred to a support group for parents of similarly afflicted children and should be informed about current research efforts. The contribution to knowledge about Rett syndrome that can be made by allowing postmortem examination of the child should be emphasized; parents can thereby be enlisted as co-investigators into this poorly understood disease (J Child Neurol 1988;3(Suppl):S89-S90).