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The EURO-WABB Project

An EU Rare Diseases Registry for Wolfram syndrome, Alström syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes.

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Work Package 3 : Evaluation of the Project

Workpackage description

Task 1: Evaluation plan

The purpose is to ensure the achievement of the deliverables, and to measure progress towards the strategic objective. The method is to measure the project process indicators for internal evaluation, and outcome indicators such as accumulation of datasets in the registry, for external evaluation.

Task 2: Undertake the internal evaluation of the project management and other internal processes

Project partners will provide reports to the WP3 leader, who will report to the Project Management Committee. The WP3 leader will provide feedback to project partners so that corrective action can be taken if necessary as the project progresses. Indicators will include frequency of deadlines being met to deliver reports; attendance at meetings and telephone conferences; and internal audit of mechanisms for resolving disagreements.

Task 3: Systematic appraisal of quality of the project

This will assess the utility of project outcomes for meeting user needs. Patient association partners will approach new groups of patients, health professionals, researchers and policy makers with questionnaires asking about the utility of the project outcomes and how far they have been achieved. Examples include the number of research applications for use of the registry; number of core datasets added; use of the registry as an audit tool.

Task 4: Systematic appraisal of the effects of the project

Patient association partners will assess the impact of the project on target groups by approaching newly diagnosed and long standing patients and their carers; partners will use questionnaires and face to face interviews to collect subjective data on the effects of the project on individual patients. We will through local physicians use the Healthy Life Years Indicator to measure impact of the project on quality of life. We will ensure sustainability so that we can repeat this measure beyond the life of the project, through Orphanet and patient support organisations (who are associate and collaborative partners).