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Regional Results Coordinator for Generation Study
2 months ago
An 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) for confirmatory testing and necessary care pathways.
The Generation Study represents a significant UK research initiative, spearheaded by Genomics England (GEL), which investigates the clinical advantages, challenges, and logistics of implementing whole genome sequencing as a screening method for approximately 250 treatable genetic disorders in newborns. This initiative aims to expedite diagnosis and access to treatments for rare genetic conditions by offering testing to a substantial number of newborns across NHS recruiting Trusts in England.
Key Responsibilities
In this newly created role, the post holder will be instrumental in managing the results pathway for the Generation Study participants in the South East. Acting as the primary contact for 'condition suspected' results, the coordinator will collaborate closely with Genomics England, local Trusts, and the Evelina London hospital to ensure a seamless transition from research study to NHS care. This includes engaging with NHS newborn screening services to facilitate effective communication and support for parents during the results return process.
The coordinator will work in conjunction with the South East GMS Generation Study team and local research groups to establish consistent care approaches, develop robust referral pathways, and monitor activities to enhance patient care quality and inform the study outcomes.
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. The GMS collaborates with regional Clinical Genetics Services to implement standardized genomic testing pathways and integrate genomic medicine into routine healthcare. The organization is committed to reducing variations in care and improving patient outcomes through effective use of genomic advancements.
The role is integrated within a leading NHS Trust, which provides comprehensive health services for diverse populations, ensuring high-quality, coordinated care for mothers, babies, and children.
Qualifications and Experience
Applicants should possess a background in nursing, midwifery, or genetic counseling, with relevant professional registration. Essential experience includes:
- Knowledge of genomics and clinical genetics, particularly within NHS screening programs.
- Experience in cross-organizational collaboration to achieve shared objectives.
- Proficiency in developing and delivering educational initiatives for clinical personnel.
- Experience in managing clinical research projects and working with families affected by inherited or rare conditions.
Skills Required
Successful candidates will demonstrate:
- Strong communication and interpersonal skills, capable of engaging a diverse range of stakeholders.
- IT proficiency, including familiarity with MS Office and hospital information systems.
Additional Information
This position is subject to a Disclosure and Barring Service check and requires current UK professional registration.
