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To provide an overview of the I‐CAH Registry. Following the successful roll‐out of the I‐DSD Registry in the 2000s, it was felt that there was a need for a registry for congenital adrenal hyperplasia (CAH) and this was launched in 2014 as a dedicated module within the original registry. In addition to supporting and promoting research, the I‐CAH Registry acts as an international tool for benchmarking of clinical care and it does this through the collection of standardised data for specific projects. Surveillance of novel therapies in the field of CAH can also be achieved via global collaborations. Its robust governance ensures adherence to the international standards for rare disease registries. Rare disease registries such as the I‐CAH Registry are important tools for all stakeholders involved in the care of people with CAH. [ABSTRACT FROM AUTHOR]

Background: In England, court‐based mental health liaison and diversion (L&D) services work across courts and police stations to support those with severe mental illness and other vulnerabilities. However, the evidence around how such services support those with neurodevelopmental disorders (NDs) is limited. Aims: This study aimed to evaluate, through the lens of court and clinical staff, the introduction of a L&D service for defendants with NDs, designed to complement the existing L&D service. Methods: A realist evaluation was undertaken involving multiple agencies based within an inner‐city Magistrates' Court in London, England. We developed a logic model based on the initial programme theory focusing on component parts of the new enhanced service, specifically training, screening, signposting and interventions. We conducted semi‐structured interviews with the court staff, judiciary and clinicians from the L&D service. Results: The L&D service for defendants with NDs was successful in identifying and supporting the needs of those defendants. Benefits of this service included knowledge sharing, awareness raising and promoting good practice such as making reasonable adjustments. However, there were challenges for the court practitioners and clinicians in finding and accessing local specialist community services. Conclusion: A L&D service developed for defendants with NDs is feasible and beneficial to staff and clinicians who worked in the court setting leading to good practice being in place for the defendants. Going forward, a local care pathway would need to be agreed between commissioners and stakeholders including the judiciary to ensure timely and equitable access to local services by both defendants and practitioners working across diversion services for individuals with NDs. [ABSTRACT FROM AUTHOR]

Objective: Congenital adrenal hyperplasia (CAH) requires exogenous steroid replacement. Treatment is commonly monitored by measuring 17‐OH progesterone (17OHP) and androstenedione (D4). Design: Retrospective cohort study using real‐world data to evaluate 17OHP and D4 in relation to hydrocortisone (HC) dose in CAH patients treated in 14 countries. Patients: Pseudonymized data from children with 21‐hydroxylase deficiency (21OHD) recorded in the International CAH Registry. Measurements: Assessments between January 2000 and October 2020 in patients prescribed HC were reviewed to summarise biomarkers 17OHP and D4 and HC dose. Longitudinal assessment of measures was carried out using linear mixed‐effects models (LMEM). Results: Cohort of 345 patients, 52.2% female, median age 4.3 years (interquartile range: 3.1–9.2) were taking a median 11.3 mg/m2/day (8.6–14.4) of HC. Median 17OHP was 35.7 nmol/l (3.0–104.0). Median D4 under 12 years was 0 nmol/L (0–2.0) and above 12 years was 10.5 nmol/L (3.9–21.0). There were significant differences in biomarker values between centres (p < 0.05). Correlation between D4 and 17OHP was good in multiple regression with age (p < 0.001, R2 = 0.29). In longitudinal assessment, 17OHP levels did not change with age, whereas D4 levels increased with age (p < 0.001, R2 = 0.08). Neither biomarker varied directly with dose or weight (p > 0.05). Multivariate LMEM showed HC dose decreasing by 1.0 mg/m2/day for every 1 point increase in weight standard deviation score. Discussion: Registry data show large variability in 17OHP and D4 between centres. 17OHP correlates with D4 well when accounting for age. Prescribed HC dose per body surface area decreased with weight gain. [ABSTRACT FROM AUTHOR]

Background and objectives The COVID-19 pandemic has a negative impact on the blood donation process, and the whole world nowadays is struggling to maintain a sufficient safe blood supply. The aim of this study was to identify the reasons for lapsing from blood donation during the COVID-19 pandemic among the Sudanese blood donors, and also to determine the motives for returning to blood donation. Materials and methods This was a cross-sectional study. Our population was all lapsing Sudanese blood donors who received an invitation from the national central laboratory and did not respond. We used an interviewing questionnaire, and interviews were done through phone calls. Result 674 blood donors had participated in our study. About 94-6% of the participants were males, and the majority was younger than 36 years. The most common reason for lapsing from blood donation was staying at home to avoid the COVID-19 infection (60-6%). About 63-4% of the participants said that they would return to donate if there were regular invitations. And 52-4% of our participants said they would return if the COVID-19 pandemic was controlled. The altruistic factor was the most common motivation for first time donation. Conclusion We have to find strategies to overcome this reduction in the blood donors. We have to raise the awareness of people about the importance of maintaining adequate blood supply; also we have to provide mobile donation sites and to send regular invitations to the donors. [ABSTRACT FROM AUTHOR]