{"id":42,"date":"2022-10-13T14:01:21","date_gmt":"2022-10-13T14:01:21","guid":{"rendered":"https:\/\/creditcontinue.coventry.domains\/cysticfibrosis-youdecide\/?page_id=42"},"modified":"2023-07-14T12:13:53","modified_gmt":"2023-07-14T12:13:53","slug":"you-decide-2","status":"publish","type":"page","link":"https:\/\/creditcontinue.coventry.domains\/cysticfibrosis-youdecide\/you-decide-2\/","title":{"rendered":"You Decide"},"content":{"rendered":"\t\t
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Two different ways to introduce extended genetic testing for cystic fibrosis are being considered. They are described here as ‘Specific’ <\/strong>and ‘Sensitive’<\/strong>.<\/p>\n

To help you decide which approach you would prefer, the following filmed experiences illustrate<\/span>\u00a0parents’<\/span> real-life reflections on receiving different outcomes from newborn screening. <\/span><\/p>\n

Whether the extended genetic tests are undertaken in a ‘Specific’<\/strong> or ‘Sensitive’<\/strong> way will affect the number of parents receiving the <\/span>different outcomes. <\/span><\/p>\n

After reading the Safeguarding<\/strong><\/span> message, please play through the experiences and complete the polls asking for your initial thoughts.<\/p>\n

Your view may change as you go through the experiences. At the bottom of the page, when you have watched all 4 experiences you are asked to share your final decision via the ‘My Decision’<\/strong> survey.\u00a0<\/p>\n

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\n\n\t\t\t\t\t\tSafeguarding<\/span>\n\t\t\t\n\t\t\t\t\t\t
The following videos have been designed to help you to form a view on the two\u00a0different approaches to extended genetic testing in newborn screening. The scenes are performed by\u00a0actors, but\u00a0are based on \u2018real life' stories of families.\u00a0While the characters are fictional, their speech is based on parents\u2019 accounts of \u2018heel-prick\u2019 newborn screening that were collected through research.\u00a0The scenes contain themes that some people may find challenging or upsetting.\u00a0These include experiences of receiving positive results from newborn screening, and\u00a0parents'\u00a0reactions to these.\u00a0We encourage careful viewing. You may not want to watch if a child could read or\u00a0hear the content, as it may not be appropriate for them.\u00a0Should you feel distressed before, during or after watching the content, or would\u00a0like further information or support regarding cystic fibrosis screening and its impact,\u00a0please see\u00a0the 'Further Information and Support' section located at the top of the page. <\/span>\n\t\t\t\n\t\t\t\t\t\t