FH Cascade Database Wales FH Project

FH Cascade (Family) Testing Cascade testing pilot project  commenced 2005  FH specialist nurse led Aim of the project:  To improve the identification and management of those with FH  Designed to provide a template for implementation within the NHS

FH Cascade Database Specialist database – essential for an FH cascade testing programme The following is one of the recommendations in the recently published NICE FH guideline: ‘ The use of a nationwide, family-based, follow-up system … to enable comprehensive identification of people affected by FH’

Dutch database Dutch national screening programme for FH  Over 45,000 family members have been genotyped and approx 18,000 of these have been diagnosed with FH. Database: Pass Clinical® software programme Clinical pilot of database commenced 2009

Key Features 1. Pedigree drawing function Integrated with the database Uses visual markers and colour coding Completely flexible and adaptable to requirements Allows a visual overview of the whole family

Key features 2. Workflow management All the relevant specialists have access to screen which shows a complete overview of all their tasks and the tasks of co-workers who are involved in the cascade testing process User tasks appear in a box Co-worker’s tasks appear in a list – e.g. Other specialist nurses, lab technicians etc

Cascade testing workflow

A ‘traffic light system’ is used which colour codes the individuals within the workflow boxes/lists. If an individual has remained at a particular step for over a specific amount of time, they will be flagged amber or red, depending on how overdue the particular task is.

Key Features 2. Template letters and archiving  For the steps that require sending letters, templates have been integrated into the database.  All correspondence between health professionals and the patient is archived.

Key Features 3. The ability to co-ordinate testing at a national level Families who are spread out over large geographical areas provide a challenge to health professionals carrying out FH cascade testing. However, this system allows the coordination of a whole family by several different co-workers in different locations. It does this by allowing the transfer of specific individuals in a family to colleagues that cover their particular catchment area.

Key Features 4. Audit and research tool Produces an audit trail Reporting function Reports on patient data Reports based on clinical trial criteria Management reports Can be exported to Excel, SPSS etc.

Final Points Software which was developed for the Dutch FH screening programme is being adapted and piloted for use in Wales In Holland, it has improved the efficiency of the cascade testing process. Secure - password protected and encrypted Initial impressions are very favourable It can be adapted to other cardiogenetic conditions with relatively minor modifications.

 Website developed to support FH Family Forum (patient support group)  Educational resource for families & health professionals  Content based on suggestions from FH Forum members & heath professionals.

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