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| National Confidential Enquiry into Counselling for Genetic Disorders (CEGEN) | |
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| The following questions refer to awareness of CEGEN and its reports/ publications |
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| 1) | Have you previously heard of the National Confidential Enquiry into Counselling for Genetic Disorders? | Y | ¨ | N | ¨ |
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| | If yes, please state the source |
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| 2) | Have you read any of the following reports or published articles from the Enquiry? |
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| Downs Syndrome | Y | ¨ | N | ¨ | |
| | Medullary thyroid carcinoma (MEN) | Y | ¨ | N | ¨ | |
| | Neural Tube Defects (NTD) | Y | ¨ | N | ¨ | |
| | Cystic Fibrosis | Y | ¨ | N | ¨ | |
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| (3a) | Does your unit have local or regional written policies/ guidelines for screening for any of the following (please enclose copies) |
| | | Local | | Regional |
| | Downs syndrome | Y | ¨ | N | ¨ | | Y | ¨ | N | ¨ |
| | Cystic Fibrosis | Y | ¨ | N | ¨ | | Y | ¨ | N | ¨ |
| | Neural Tube Defects | Y | ¨ | N | ¨ | | Y | ¨ | N | ¨ |
| | Haemoglobinopathie | Y | ¨ | N | ¨ | | Y | ¨ | N | ¨ |
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| | If unable to enclose copies, please state reason(s) |
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| (3b) | If yes to (3a), how often are they updated to take account of current accepted evidence? |
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| (3c) | If yes to (3a), were guidelines/ policies agreed by all those involved in implementing them? | Y | ¨ | N | ¨ |
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| | If no, please give a reason |
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| (3d) | Has your unit allocated a key person responsible for co-ordinating antenatal screening and diagnosis? | Y | ¨ | N | ¨ |
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| If yes, please provide details eg status/title and contact address. |
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| Many thanks for your co-operation |
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| CEGEN - Evaluation Questionnaire | |
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| The following questions refer to awareness of CEGEN and its reports/ publications |
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| 1) | Have you previously heard of the National Confidential Enquiry into Counselling for Genetic Disorders? | Y | ¨ | N | ¨ |
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| | If yes, can you state the source |
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| 2) | Have you previously read any of the following reports or published articles from the Enquiry? |
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| | Downs Syndrome | Y | ¨ | N | ¨ |
| | Medullary thyroid carcinoma (MEN) | Y | ¨ | N | ¨ |
| | Neural Tube Defects (NTD) | Y | ¨ | N | ¨ |
| | Cystic Fibrosis | Y | ¨ | N | ¨ |
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| | If yes to Question 2, please answer the following |
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| (b) | Were any of the recommendations in the report(s) described well enough for them to be implemented in your unit? | Y | ¨ | N | ¨ |
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| | If yes, which ones |
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| | If no, why not |
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| (c) | If yes to (b), have you implemented any of the recommendations? | Y | ¨ | N | ¨ |
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| | If yes, please indicate which report and which recommendation |
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| | If no, please give a reason |
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| (d) | If yes to (c), was the impact of change evaluated? | Y | ¨ | N | ¨ |
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| | If yes, what was the result |
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| | If no, provide a reason |
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| Thank you for your co-operation |