Sharing is caring: a call for a new era of rare disease research and development.

Scientific advances in the understanding of the genetics and mechanisms of many rare diseases with previously unknown etiologies are inspiring optimism in the patient, clinical, and research communities and there is hope that disease-specific treatments are on the way. However, the rare disease community has reached a critical point in which its increasingly fragmented structure and operating models are threatening its ability to harness the full potential of advancing genomic and computational technologies. Changes are therefore needed to overcome these issues plaguing many rare diseases while also supporting economically viable therapy development.

Data silos are undermining drug development and failing rare disease patients.

Data silos are proliferating while research and development activity explode following genetic and immunological advances for many clinically described disorders with previously unknown etiologies. The latter event has inspired optimism in the patient, clinical, and research communities that disease-specific treatments are on the way. However, we fear the tendency of various stakeholders to balkanize databases in proprietary formats, driven by current economic and academic incentives, will inevitably fragment the expanding knowledge base and undermine current and future research efforts to develop much-needed treatments.

The International Wayfinding Strategy Scale: evidence for cross-cultural use with a sample from the UK.

This study suggested Lawton and Kallai's 2002 International Wayfinding Strategy Scale was appropriate for use in the UK. Participants at a northeastern English university (N = 148) completed the scale. Principal components analysis (oblimin rotation) with 2 factors specified supported the expected structure and indicated the scale could be used to measure wayfinding strategies across cultures; however, 1 of the 17 original items on the scale was not suitable for use with a UK sample and 1 item loaded on the opposite factor as expected.

A school-based randomized controlled trial of peer-led sex education in England.

This article discusses the design of an ongoing cluster-randomized trial comparing two forms of school-based sex education in terms of educational process and sexual health outcomes. Twenty-nine schools in southern England have been randomized to either peer-led sex education or to continue with their traditional teacher-led sex education. The primary objective is to determine which form of sex education is more effective in promoting young people's sexual health.