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. 2022 Dec;30(12):1309-1313.
doi: 10.1038/s41431-022-01199-3. Epub 2022 Oct 4.

Research participants: critical friends, agents for change

Jillian Hastings Ward  1 , Rebecca Middleton  2 , David McCormick  2 , Helen White  2 , Ismael Kherroubi Garcia  2 , Shelley Simmonds  2 , Latha Chandramouli  2 , Andrew Hart  2
Affiliations

Research participants: critical friends, agents for change

Jillian Hastings Ward et al. Eur J Hum Genet. 2022 Dec.
No abstract available

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Conflict of interest statement

JHW is the independent Chair of the Participant Panel at Genomics England, a member of the UK National Genomics Board, and a founding Board Member of the CureGRIN Foundation. She also sits on the NHS Digital Research Advisory Group and is a lay adviser to Health Data Research UK. RM is the independent Vice Chair of the Participant Panel at Genomics England, and Founder and CEO of Hereditary Brain Aneurysm Support (CIC). DMc is a Lay Patient Representative to the MSc in Genomic Sciences, Manchester Academy for Healthcare Scientist Education (MAHSE) Patient Forum, and Interim Chair to the Patient & Public Voice Panel, North West Genomic Medicine Service Alliance. SS is a Trustee of Disability Rights UK, a member of the PPIE Panel of the North Thames Genomic Medicine Service Alliance, a lay member of the Neuromuscular North Star Clinical Network, a campaigner for the Changing Places Consortium and the founder of Fraser & Friends (Disability Rights & Rare Disease Advocate). LC is a community paediatrician, Sirona Care & Health.

Figures

Fig. 1
Fig. 1
Case study: improving links between genomics researchers and patients.
See this image and copyright information in PMC

References

    1. Genomics England. The participant panel. 2022. https://www.genomicsengland.co.uk/patients-participants/participant-panel.
    1. Genomics England. Origins. 2022. https://www.genomicsengland.co.uk/about-us/origins.
    1. The 100,000 Genomes Project Pilot Investigators. 100,000 genomes pilot on rare-disease diagnosis in health care — preliminary report. N Engl J Med. 2021;385:1868–80. doi: 10.1056/NEJMoa2035790. - DOI - PMC - PubMed
    1. Davies S. Chief Medical Officer annual report 2016: generation genome. Dept for Health and Social Care; 2017. https://assets.publishing.service.gov.uk/government/uploads/system/uploa....
    1. National Institute for Health and Care Research. Payment guidance for members of the public considering involvement in research. 2022. https://www.nihr.ac.uk/documents/payment-guidance-for-members-of-the-pub....

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