Deaths by suicide and their relationship with general and psychiatric hospital discharge: 30-year record linkage study.

BACKGROUND: Studies have rarely explored suicides completed following discharge from both general and psychiatric hospital settings. Such research might identify additional opportunities for intervention. AIMS: To identify and summarise Scottish psychiatric and general hospital records for individuals who have died by suicide. METHOD: A linked data study of deaths by suicide, aged ≥15 years from 1981 to 2010. RESULTS: This study reports on a UK data-set of individuals who died by suicide (n = 16 411), of whom 66% (n = 10 907) had linkable previous hospital records. Those who died by suicide were 3.1 times more frequently last discharged from general than from psychiatric hospitals; 24% of deaths occurred within 3 months of hospital discharge (58% of these from a general hospital). Only 14% of those discharged from a general hospital had a recorded psychiatric diagnosis at last visit; an additional 19% were found to have a previous lifetime psychiatric diagnosis. Median time between last discharge and death was fourfold greater in those without a psychiatric history. Diagnoses also revealed that less than half of those last discharged from general hospital had had a main diagnosis of 'injury or poisoning'. CONCLUSIONS: Suicide prevention activity, including a better psychiatric evaluation of patients within general hospital settings deserves more attention. Improved information flow between secondary and primary care could be facilitated by exploiting electronic records of previous psychiatric diagnoses.

EURO-WABB: an EU rare diseases registry for Wolfram syndrome, Alström syndrome and Bardet-Biedl syndrome.

BACKGROUND: Wolfram, Alström and Bardet-Biedl (WABB) syndromes are rare diseases with overlapping features of multiple sensory and metabolic impairments, including diabetes mellitus, which have caused diagnostic confusion. There are as yet no specific treatments available, little or no access to well characterized cohorts of patients, and limited information on the natural history of the diseases. We aim to establish a Europe-wide registry for these diseases to inform patient care and research. METHODS: EURO-WABB is an international multicenter large-scale observational study capturing longitudinal clinical and outcome data for patients with WABB diagnoses. Three hundred participants will be recruited over 3 years from different sites throughout Europe. Comprehensive clinical, genetic and patient experience data will be collated into an anonymized disease registry. Data collection will be web-based, and forms part of the project's Virtual Research and Information Environment (VRIE). Participants who haven't undergone genetic diagnostic testing for their condition will be able to do so via the project. CONCLUSIONS: The registry data will be used to increase the understanding of the natural history of WABB diseases, to serve as an evidence base for clinical management, and to aid the identification of opportunities for intervention to stop or delay the progress of the disease. The detailed clinical characterisation will allow inclusion of patients into studies of novel treatment interventions, including targeted interventions in small scale open label studies; and enrolment into multi-national clinical trials. The registry will also support wider access to genetic testing, and encourage international collaborations for patient benefit.