Young people as citizens: a case study of participation and change in county Durham.

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Social Justice, The Common Weal and Children and Young People in Scotland

This paper argues that: • Scotland should organise itself around social justice, which addresses entitlements, redistribution, recognition and respect. • Children and young people have particular views on what social justice means for them. • Rights have a particular contribution to make to social justice in term of entitlements, claims and minimal standards. • The combination of piecemeal incorporation of children’s rights, an apolitical wellbeing framework and a lack of strong legislation to hold local authorities and other public services, private sector organisations and the third sector to account, results in children and young people encountering discrimination on an everyday basis. • To achieve social justice, a change is needed in how adults perceive children and childhood, young people and youth. Children and young people need to be recognised as contributors to their families, institutions and communities now – and not just in the future. • For children and young people to be included in the Common Weal, it needs to be concerned with the full and diverse range of structural, cultural and individual barriers that they encounter in their lives

Children’s rights to education:Where is the weight for children’s views?

This paper analyses the views and preferences of children and young people who experience barriers when attempting to engage with schools and schooling. It specifically considers processes of formal and informal exclusion and the manner in which ‘stigmatised’ children are treated within a system that’s attendance to children’s rights is, at best, sketchy and at worst - downright discriminatory. The paper poses a number of critical questions concerning the extent to which the views of children are given due weight in decision-making processes in schools, whether the background a child comes from affects the way school staff listen to them and whether school rules act as a barrier or enabler for children’s rights. In turn, these questions are related to what educational processes might look like that place due weight on the views of children, what cultures create barriers to listening in practice, and what we can learn from children’s overall experiences. The paper presents findings from a participatory empirical peer research project (funded by a Carnegie Research Incentive Grant and the University of Edinburgh Challenge Investment Fund) conducted with and by young people in schools in Scotland and the north of England. This paper is innovative as it is the product of collaborative working between academics at the University of Edinburgh, staff at Investing in Children and the young researchers who co-authored this article for publication

A novel formulation of inhaled sodium cromoglicate (PA101) in idiopathic pulmonary fibrosis and chronic cough: a randomised, double-blind, proof-of-concept, phase 2 trial

Background Cough can be a debilitating symptom of idiopathic pulmonary fibrosis (IPF) and is difficult to treat. PA101 is a novel formulation of sodium cromoglicate delivered via a high-efficiency eFlow nebuliser that achieves significantly higher drug deposition in the lung compared with the existing formulations. We aimed to test the efficacy and safety of inhaled PA101 in patients with IPF and chronic cough and, to explore the antitussive mechanism of PA101, patients with chronic idiopathic cough (CIC) were also studied. Methods This pilot, proof-of-concept study consisted of a randomised, double-blind, placebo-controlled trial in patients with IPF and chronic cough and a parallel study of similar design in patients with CIC. Participants with IPF and chronic cough recruited from seven centres in the UK and the Netherlands were randomly assigned (1:1, using a computer-generated randomisation schedule) by site staff to receive PA101 (40 mg) or matching placebo three times a day via oral inhalation for 2 weeks, followed by a 2 week washout, and then crossed over to the other arm. Study participants, investigators, study staff, and the sponsor were masked to group assignment until all participants had completed the study. The primary efficacy endpoint was change from baseline in objective daytime cough frequency (from 24 h acoustic recording, Leicester Cough Monitor). The primary efficacy analysis included all participants who received at least one dose of study drug and had at least one post-baseline efficacy measurement. Safety analysis included all those who took at least one dose of study drug. In the second cohort, participants with CIC were randomly assigned in a study across four centres with similar design and endpoints. The study was registered with ClinicalTrials.gov (NCT02412020) and the EU Clinical Trials Register (EudraCT Number 2014-004025-40) and both cohorts are closed to new participants. Findings Between Feb 13, 2015, and Feb 2, 2016, 24 participants with IPF were randomly assigned to treatment groups. 28 participants with CIC were enrolled during the same period and 27 received study treatment. In patients with IPF, PA101 reduced daytime cough frequency by 31·1% at day 14 compared with placebo; daytime cough frequency decreased from a mean 55 (SD 55) coughs per h at baseline to 39 (29) coughs per h at day 14 following treatment with PA101, versus 51 (37) coughs per h at baseline to 52 (40) cough per h following placebo treatment (ratio of least-squares [LS] means 0·67, 95% CI 0·48–0·94, p=0·0241). By contrast, no treatment benefit for PA101 was observed in the CIC cohort; mean reduction of daytime cough frequency at day 14 for PA101 adjusted for placebo was 6·2% (ratio of LS means 1·27, 0·78–2·06, p=0·31). PA101 was well tolerated in both cohorts. The incidence of adverse events was similar between PA101 and placebo treatments, most adverse events were mild in severity, and no severe adverse events or serious adverse events were reported. Interpretation This study suggests that the mechanism of cough in IPF might be disease specific. Inhaled PA101 could be a treatment option for chronic cough in patients with IPF and warrants further investigation

Finishing the euchromatic sequence of the human genome

The sequence of the human genome encodes the genetic instructions for human physiology, as well as rich information about human evolution. In 2001, the International Human Genome Sequencing Consortium reported a draft sequence of the euchromatic portion of the human genome. Since then, the international collaboration has worked to convert this draft into a genome sequence with high accuracy and nearly complete coverage. Here, we report the result of this finishing process. The current genome sequence (Build 35) contains 2.85 billion nucleotides interrupted by only 341 gaps. It covers ∼99% of the euchromatic genome and is accurate to an error rate of ∼1 event per 100,000 bases. Many of the remaining euchromatic gaps are associated with segmental duplications and will require focused work with new methods. The near-complete sequence, the first for a vertebrate, greatly improves the precision of biological analyses of the human genome including studies of gene number, birth and death. Notably, the human enome seems to encode only 20,000-25,000 protein-coding genes. The genome sequence reported here should serve as a firm foundation for biomedical research in the decades ahead