Leaflet Protocol

Protocol we use to produce our family-friendly, medically-verified leaflets

At the heart of Unique's project to develop and publish a range of disorder-specific leaflets are the families with direct personal experience of living with a chromosome disorder. Yet the first step in compiling a leaflet is to search the medical literature to discover what is already known formally about the condition. The Unique database is then examined to establish how many members are affected and to match the key features in the database with the findings from the medical literature. From the matching exercise a detailed questionnaire is drawn up for families to complete. Families are encouraged to send medical and educational reports that expand on the questionnaires and, if they wish, photographs - although individuals are never identified in Unique leaflets.

The family-derived information from the questionnaires is then collated with formal information from an expanded search of the medical literature and where necessary further questions are sent out. Permissions to publish any photographs are sought at this stage.

During this process medical professionals are identified with a current or recent interest in the disorder in question. Usually these will be geneticists, sometimes paediatricians, occasionally both. From these professionals, individuals are selected to verify the draft text. In many cases, lay verifiers are also identified.

The text is then drafted and sent to medical and lay verifiers for checking. Once the checked texts are returned and amendments incorporated, the revised text is sent to Unique's chief medical advisor Professor Maj Hulten and to the chief executive officer, Dr Beverly Searle.

The finalised text is then formatted into an illustrated leaflet and the draft leaflet circulated to all families who have submitted photographs or substantial sections of text in the form of a personal story, for example.

The leaflet is then ready for publication.