Integrating Care Pathways for People with Genetic Conditions
Initiated in 2005, this project encompasses service delivery initiatives that will bring the benefits of genetics into mainstream clinical areas. A Project Coordinator and Cardiac Liaison Nurse worked within the Regional Genetics Service (based at the Central Manchester and Manchester Children’s University Hospitals NHS Trust) to establish good practice and develop new services with links to different healthcare sectors.
The project had two major components; development and implementation of service delivery models for people with inherited cardiac conditions; and design and implementation of a range of care tools for the routine monitoring and management of patients with genetic conditions in primary and secondary care.
The Cardiac Project
This project involved three tertiary centres for cardiac care in the North West; Manchester Heart Centre, Wythenshawe Hospital in South Manchester, and Blackpool Victoria Hospital. The cardiac project trialled different methods for ascertaining families at risk from inherited cardiac disorders such as Hypertrophic Cardiomyopathy, Long QT and Brugada Syndrome, and offers appropriate genetic counselling, testing and long-term medical management.
Patient Health Records
In this project we developed and implemented new care tools for common genetic conditions including Neurofibromatosis, 22q11, Achondroplasia, Marfan syndrome and Huntington Disease. The care tools included; patient leaflets, integrated care pathways, management guidelines, and a ‘Personal Health Record’.
Investigators
The Cardiac Project
Sarah Collitt
Patient Health Records
Dr Bronwyn Kerr, Dr Jill Clayton-Smith, Dr Kay Metcalfe, Pam Griffiths, Sarah Collitt
Funding Body
The Cardiac Project
Department of Health
Patient Health Records
Department of Health
Publications
To view all Nowgen publications click here
Key Publications
Invited Presentation
Donnai D. Genetic Service Organisation for Rare Diseases European Patient Organisation for Rare Diseases (Eurodis). Annual Meeting, Berlin 5 May 2006
Poster
Nicholls S, Middleton-Price H, Davies L. _Making Written Information More Accessible. Annual Meeting of the American Society of Human Genetics, Ontario, October 2004.
