Regional Coordinator for Generation Study Outcomes
3 weeks ago
Position Overview
An exciting opportunity is available for a Regional Coordinator focused on the Generation Study, situated within the South East Genomic Medicine Service.
The Generation Study represents a significant UK research initiative, spearheaded by Genomics England (GEL), which investigates the clinical advantages, challenges, and practicalities of implementing whole genome sequencing as a screening method for approximately 250 treatable genetic disorders in newborns. This initiative aims to enhance diagnosis and access to treatments for rare genetic conditions by providing testing to a substantial number of newborns across NHS recruiting Trusts.
This newly created position will collaborate with GEL and clinical teams to ensure that newborns and their families receiving a 'suspected condition' result from the study transition smoothly to the NHS for confirmatory testing and necessary care pathways, thereby facilitating rapid diagnosis and treatment that directly influences clinical outcomes.
Key Responsibilities
Operating at a regional level, the individual in this role will be instrumental in managing the results pathway of the Generation Study for patients recruited in the South East. Acting as the primary contact for 'condition suspected' results, they will liaise closely with Genomics England, local Trusts, and referral centers to ensure a seamless transition from research study to NHS care. This includes coordinating with NHS newborn screening services and providing support to families throughout the results return process.
The role involves close collaboration with the South East GMS Generation Study team and local research groups to establish consistent care approaches across the region, develop effective referral pathways, monitor activities, and capture outcomes to enhance patient care quality.
About the Organization
This position is part of the South East Genomic Medicine Service (GMS), one of seven regional services dedicated to advancing genomic medicine and research. We partner with regional Clinical Genetics Services to implement standardized genomic testing pathways and integrate genomic medicine into routine healthcare, aiming to minimize unwarranted variations and improve patient outcomes.
The role is hosted within a leading NHS Trust that provides comprehensive health services for children, young people, and women, offering unique opportunities for high-quality, integrated care.
Qualifications and Experience
Essential:
- Registered Nurse, Midwife, or Genetic Counsellor with relevant professional registration.
- Knowledge and experience in genomics, clinical genetics, or NHS screening programs.
- Experience in cross-organizational collaboration to achieve shared objectives.
- Proven track record in developing and delivering education for clinical staff.
- Experience working with patients and families affected by inherited or rare conditions.
Skills
Essential:
- Strong communication and interpersonal skills, capable of engaging a diverse range of stakeholders.
- Proficiency in IT, including MS Office and hospital database systems.
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London, Greater London, United Kingdom Guy's and St Thomas' NHS Foundation Trust Full timePosition OverviewAn exceptional opportunity has emerged for a Regional Results Coordinator for the Generation Study, situated within the South East Genomic Medicine Service. This role is pivotal in facilitating the transition of newborns and their families who receive a 'suspected condition' result from the research study to the National Health Service (NHS)...
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