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Couples will be invited to participate in the research by their healthcare company and will be eligible for the trial. Those who consent to carrier screening will be sent mouth swab kits with samples returned by mail. The carrier testing will be carried out by accredited testing labs in collaboration with clinical genetics laboratories. Following the return of screening findings, and approximately 13 to 19 months after results, all participants will be asked to complete an initial questionnaire at study enrollment and encouraged to complete optional questionnaires at the time of screening. GENE LIST FOR CARRIER SCREENING The following criteria were met by the almost 1300 genes in the Mackenzie's Mission carrier screening panel: One of the few conditions where an 'average' couple will take steps to prevent the birth of a child with the condition.
Source link: https://clinicaltrials.gov/ct2/show/NCT04157595
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