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Project Report - NHS Genomic Medicine Centres: Process and Participant Materials used in the 100,000 Genomes Project

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Benjamin, Caroline, Boudioni, Markella, Ward, Helen, Marston, Elliot, Lindenmeyer, Antje, Bangee, Munirah orcid iconORCID: 0000-0001-8548-6692, Cook Lucas, Julie orcid iconORCID: 0000-0002-6391-5430, LEAVEY, RALPH, Caulfield, Mark et al (2016) Project Report - NHS Genomic Medicine Centres: Process and Participant Materials used in the 100,000 Genomes Project. Project Report. Genomics England, Dawson Hall, Charterhouse Square, London EC1M 6BQ.

[thumbnail of __lha-031_pers-J_0006D93E_My Documents_clok_Short Document 02 12 2016 (1).pdf]
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Official URL: https://www.genomicsengland.co.uk/consent-evaluati...


Contents

Section title
Section author
Page
Foreword from Professor Michael Parker
UNSPECIFIED
3
Foreword from Professor Sue Hill
UNSPECIFIED
4
Evaluation Summary
UNSPECIFIED
5
Background
UNSPECIFIED
12
1.1 Context of Consent in the 100,000 Genomes Project
UNSPECIFIED
12
1.2 Context of the National Service Evaluation Project
UNSPECIFIED
12
1.3 Shared purpose and scope of project
UNSPECIFIED
13
2 Methods
UNSPECIFIED
14
2.1 Evaluation Methodology
UNSPECIFIED
14
2.2 Focus Group Methods
UNSPECIFIED
17
2.3 Health Professional Survey Methods
UNSPECIFIED
17
2.4 Participant Feedback Methods
UNSPECIFIED
18
3 Results
UNSPECIFIED
22
3.1 PPI Focus Groups
UNSPECIFIED
22
Topic area 1 - Logical flow of consent documentation
UNSPECIFIED
22
Topic area 2 - Complexity of project structure
UNSPECIFIED
24
Topic area 3 - Seeking broad consent for additional findings
UNSPECIFIED
26
Topic area 4 - General transformational and sustainability issues
UNSPECIFIED
27
Additional barriers and facilitators
UNSPECIFIED
29
3.2 Health Professional Recruiter Survey
UNSPECIFIED
31
Summary
UNSPECIFIED
37
3.3 Participant Survey
UNSPECIFIED
38
Rare Disease & Cancer (n = 172)
UNSPECIFIED
39
Summary
UNSPECIFIED
41
4 Synthesis of Activities
UNSPECIFIED
42
Synthesis methods
UNSPECIFIED
42
Visual Mapping
UNSPECIFIED
44
Synthesis Tables
UNSPECIFIED
45
Synthesis summary
UNSPECIFIED
50
5 Recommendations
UNSPECIFIED
51
Acknowledgements
UNSPECIFIED
54
Glossary
UNSPECIFIED
55
References
UNSPECIFIED
55

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