{
  "abstract": "Introduction The Generation Study is delivering genomic newborn sequencing (gNBS) for 100,000 babies to explore the benefits, challenges, and practicalities of offering gNBS to parents in England. We are conducting an independent process and impact evaluation of the Generation Study.Methods Interviews with professionals, site observations and documentary analysis have been conducted across six NHS Trusts who were early Generation Study implementors involved in recruitment and consent. Interviews are now being conducted more widely with professionals returning gNBS results. To date, 41 interviews are complete.Results Implementation enablers included: swift responsiveness to site queries; support from clinical teams and senior leaders; ad hoc support to recruit and consent parents; administrative support; translated participant information; access to interpreters. Implementation barriers included: too few staff to cover recruitment; challenges recruiting and retaining staff; manual data entry data for local and study wide databases; missed cord samples; and the challenges of recruiting a diverse population. Challenges for return of results include coordinating appointments and results being unexpected for some parents.Conclusion Our findings highlight the enablers and barriers and experienced by professionals delivering gNBS in a research study. Future work should assess whether and how these early barriers are being addressed over time.",
  "authors": [
    {
      "affiliations": [
        "NHS North Thames Genomic Laboratory Hub, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK"
      ],
      "name": "Melissa Hill"
    },
    {
      "affiliations": [
        "Rapid Research Evaluation and Appraisal Lab (RREAL), University College London, London, UK"
      ],
      "name": "Ailey McLeod"
    },
    {
      "affiliations": [
        "Rapid Research Evaluation and Appraisal Lab (RREAL), University College London, London, UK"
      ],
      "name": "Grainne Brady"
    },
    {
      "affiliations": [
        "Rapid Research Evaluation and Appraisal Lab (RREAL), University College London, London, UK"
      ],
      "name": "Katie Gilchrist"
    },
    {
      "affiliations": [
        "Rapid Research Evaluation and Appraisal Lab (RREAL), University College London, London, UK"
      ],
      "name": "Sigrún Clark"
    },
    {
      "affiliations": [
        "Warwick Medical School, Warwick University, Coventry, UK"
      ],
      "name": "Felicity Boardman"
    },
    {
      "affiliations": [
        "Population, Policy and Practice, UCL Great Ormond Street Institute of Child Health, London, UK"
      ],
      "name": "Celine Lewis"
    },
    {
      "affiliations": [
        "Rapid Research Evaluation and Appraisal Lab (RREAL), University College London, London, UK"
      ],
      "name": "Cecilia Vindrola-Padros"
    }
  ],
  "title": "P5 Implementing the generation study in the English national health service? Early insights from health professionals",
  "uid": "d0d7b20a-c63e-5c45-a4ac-d0e61b42b354"
}