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This study addresses the following policy questions: What forms of debt relief and additional financing are most effective in mitigating the fiscal impact of the COVID-19 pandemic in countries that are at risk of or facing debt distress? What would the subsequent impact be on government health and HIV financing up until 2030? To answer these questions, five debt relief and additional financing options are hypothetically applied to seven Sub-Saharan African countries using a macro-fiscal programming framework and debt scenario modelling. Aggregate impacts demonstrate that, on average, the COVID-19 period has had a significant impact on government health and HIV-related expenditure. Each of the five presented options studied are shown to have an iteratively greater impact in mitigating the effects of the pandemic on government health and HIV-related expenditure. However, none of the debt relief and additional financing options succeed in offsetting the loss of health and HIV fiscal space that has occurred during the COVID-19 pandemic. Adequate solutions to make up for this shortfall require the consideration of options beyond the current policy dialogue.

Electronic institutional review board systems (eIRBs) have become an integral component in ensuring compliance with Human Research Protection Program (HRPP) and IRB requirements. Despite this, few of these systems are configured to administer the single IRB (sIRB) process mandated by the National Institutes of Health (NIH) for multisite research. We interviewed 103 sIRB administrators, chairs, members, and staff members about their experiences with sIRB multisite research review. We observed three main obstacles to adapting existing eIRB systems to accommodate the sIRB process: (1) Existing systems are not designed for sIRBs and are not configured to administer sIRB responsibilities, (2) they are not interoperable, and (3) resources to improve existing systems are lacking. Our findings suggest that IRBs that act as an sIRB will need major changes to their electronic systems in order to accommodate sIRB processes. These difficulties threaten both the ability of IRBs to focus on ethical rather than bureaucratic problems and the efficiency of multisite trials.

A rise in the current trend of corrosive substance attacks have been reported in the UK, causing devastating effects on victims. The optimal management of these patients requires the specialist skills of the burn multidisciplinary team (MDT) to address the resulting physical and psychological trauma experienced. However, burn care must commence in the pre-hospital setting. The public and first responders are invaluable resources in helping to limit the adverse effects of burns. Challenges of burn care outside the Burns Unit are not limited to the treatment of the injured patient and the rehabilitation of survivors. These challenges also encompass better education of the public and allied health professionals, as well as planning strategies to reduce the incidence of acid attacks. Prevention is always better than cure. This paper discusses the broadening of the MDT to improve outcomes in acid attacks by exploring the wider roles of the public, media, emergency services, police, legislation and better education.

The Newborn Behavioral Observations (NBO) system is a relationship-based tool that helps parents recognize their infant's competencies and learn their behavioral cues, with the goals of enhancing parental responsiveness and satisfaction in the infant-parent relationship. In our study, a pediatrician integrated the NBO into 44 pediatric health care visits of infants in rural Pakistan villages, under the remote guidance of two U.S.-based child psychiatrists. A clinician then gave the mothers a survey about their experience of the NBO and found that the mothers were highly satisfied, reporting greater appreciation of their infant's strengths, greater understanding of their infant's behavioral cues, stronger attachment to their infant, and greater self-confidence as a mother. In their consideration of these results, the authors explore cultural reasons for the mothers' responses and generate hypotheses to inform an outcome study of a similar intervention. This was a feasibility and acceptability study and was not randomized, had no control group, and did not use objective measures of outcome.

School closures were one of the earlier actions taken as the world tried to contain the COVID-19 outbreak, a decision impacting nearly three-fourths of the learners worldwide. One year into the pandemic, over 200 million students still faced disruptions to their education. Nearing the end of another academic year that has occurred entirely during the pandemic, many schools remained fully or partially closed for in-person education, altering routines and representing potential hardships to the next generation and their families. This article will explore the potential impacts of school closures on children and adolescents related to increased screen time, irregular sleep patterns, less balanced diets, learning difficulties, and changes in social interaction. In addition, we note broader familial difficulties likely accompanying the loss of the mitigating effects of schools and their associated support systems, such as parental stress and work responsibilities, loss of employment, intimate partner violence, child abuse and neglect, and parental substance abuse, which appear to have increased during the pandemic. Considering what is known about the impact from previous natural catastrophes, the populations at risk, and the early but not yet definitive data from the current pandemic, we stress the urgent need for robust data as we prepare for a new academic year in the Northern Hemisphere. Although we currently lack consistent and complete data, signs for concern include a rise in pediatric emergency room visits for mental health and substance use issues in many parts of the world. This paper aims to stimulate a discussion about the potential mental health effects of school closures for children and adolescents in the context of a pandemic.

Chemical burn injuries represent a small proportion of all burns. They are, however, a unique and challenging subset with over 25,000 potential causative agents. Their management, requiring specialist knowledge and expertise, is ideally performed by specialist burns services. A large proportion of these injuries occur in the workplace, with significant socioeconomic implications. Health and safety standards are therefore paramount for prevention, particularly through ensuring adequate eye protection and clothing. The increasing numbers of acid-related assaults, chemical warfare, and terrorism comprise a complex part of burn care internationally. This chapter highlights the key features of chemical burns, the most commonly encountered agents, and their pathophysiology. A thorough and safe plan for assessment and acute management of these injuries is provided, emphasizing the importance of cross-speciality involvement when appropriate.

Cardiac point-of-care ultrasound (POCUS) is a quick and accurate tool to assess a patient's cardiovascular and hemodynamic status by measuring the E-point septal separation (EPSS) and left ventricular ejection fraction. The case presented here highlights the potential for increased use of POCUS to guide resuscitation in the prehospital setting and during critical care transport. A 56-year-old male presented to a rural emergency department with chest pain and was found to have an inferior STelevation myocardial infarction (STEMI). Local helicopter air ambulance was called to transport the patient to a facility capable of cardiac catheterization. In route, the flight physician performed a cardiac POCUS exam which revealed decreased cardiac perfusion, a hypokinetic inferior wall, and overall decreased contractility. EPSS was measured at 0.77cm, indicating moderate left ventricular ejection fraction (LVEF) reduction. A cardiac left ventriculogram later confirmed a 40% ejection fraction as well as wall motion abnormalities of the inferior wall. The patient was found to have 100% occlusion of the right coronary artery that was revascularized with balloon angioplasty and a drug-eluting stent. He ultimately did well and was discharged home.

Sotos syndrome is an overgrowth-intellectual disability (OGID) syndrome caused by NSD1 pathogenic variants and characterized by a distinctive facial appearance, an intellectual disability, tall stature and/or macrocephaly. Other associated clinical features include scoliosis, seizures, renal anomalies, and cardiac anomalies. However, many of the published Sotos syndrome clinical descriptions are based on studies of children; the phenotype in adults with Sotos syndrome is not yet well described. Given that it is now 17 years since disruption of NSD1 was shown to cause Sotos syndrome, many of the children first reported are now adults. It is therefore timely to investigate the phenotype of 44 adults with Sotos syndrome and NSD1 pathogenic variants. We have shown that adults with Sotos syndrome display a wide spectrum of intellectual ability with functioning ranging from fully independent to fully dependent. Reproductive rates are low. In our cohort, median height in adult women is +1.9 SD and men +0.5 SD. There is a distinctive facial appearance in adults with a tall, square, prominent chin. Reassuringly, adults with Sotos syndrome are generally healthy with few new medical issues; however, lymphedema, poor dentition, hearing loss, contractures and tremor have developed in a small number of individuals.

Summary Aim To investigate the effect of ablative fractional CO2 laser (AFCO2L) on burns scar appearance and dermal architecture at 6 weeks and up to 3-years post-treatment. Methods Twenty adult patients with a burn-related scar were recruited. Inclusion criteria were a minimum scar area of 10 × 10 cm and Vancouver scar scale (VSS) score of >5 and ≥6 months since the time of injury. The region of scar was randomised to treatment/control zones. Treatment zones received 3 standardised laser treatments at 4- to 6-week intervals. All areas of scar received standard scar care. Outcome measures were recorded at baseline, 6-weeks post final treatment and up to 3 years post-treatment. Measures included blinded assessor VSS, Patient Scar Assessment Scale and histological tissue analysis. Results Nineteen and nine patients completed the short- and long-term studies, respectively. Clinical results revealed improvement in all scar areas over time. There was a statistically significant improvement in pain and itch in the treatment zone compared to the control zone at 6 weeks. Histological data revealed a significant increase in medium-sized collagen fibres at 6 weeks relative to the control site. Sub-group analysis according to scar age revealed greater histological improvement following laser treatment in immature scars relative to more mature scar. Conclusions Results demonstrate that 3 treatments of AFCO2L significantly improve scar pain, itch and dermal architecture at 6 weeks post-treatment. Histological results suggest greater potential in treating immature scar. Further investigation into the timing of laser treatment could help assist treatment protocols.

Accessibility refers to whether a product or service is usable by all regardless of disability status. Principles of accessibility are not limited to physical spaces (such as stairs or curbs) – the same principles apply to websites and public facing documents. There are guidelines to follow to make documents, web pages, presentations, products, and research findings more accessible to people with disabilities. This tip sheet offers an introduction to accessibility and will be followed by tip sheets that focus on specifics.

Purpose The LZTR1 gene has been associated with schwannomatosis tumor predisposition and is located in a region that is deleted in the great majority (89%) of patients with 22q11.2 deletion syndrome (22q11.2DS). Since it is known that approximately 1 in 500 people in the general population will develop a sporadic schwannoma and there are no reports of the occurrence of schwannoma in 22q11.2DS, we investigated whether whole-gene deletion of LZTR1 occurs in schwannomatosis and assessed the risk of schwannoma in 22q11.2DS. Methods We assessed the genetic testing results for LZTR1-associated schwannomatosis and the clinical phenotypes of patients with 22q11.2DS. Results There were no reports of schwannoma in over 1,500 patients with 22q11.2DS. In addition, no patients meeting clinical diagnostic criteria for schwannomatosis had a whole-gene deletion in LZTR1. Only 1 patient in 110 with an apparently sporadic vestibular schwannoma had a constitutional whole-gene deletion of LZTR1. Conclusion People with a large 22q11.2 deletion may have a reduced risk of developing a schwannoma compared to the general population.

Introduction Vascularised composite allotransplantation (VCA) permits like-for-like reconstruction following extensive soft tissue injuries. The initial management of extensive soft tissue injury can lead to the development of anti-HLA antibodies through injury, transfusion and cadaveric grafting. The role of antibody-mediated rejection, donor-specific antibodies and graft rejection in the context of VCA remains unclear. This systematic review aimed to determine whether pre-operative management strategies influence immunological outcome following VCA. Method A systematic review of MEDLINE, EMBASE and CINAHL using a PRISMA-compliant methodology up to February 2019 was conducted. Pre-operative, procedural and long-term outcome data were collected and recorded for all VCA recipients on an individual patient basis. Result The search revealed 3,847 records of which 114 met inclusion criteria and reported clinical data related to 100 patients who underwent 129 VCA transplants. Trauma (50%) and burns (15%) were the most frequent indications for VCA. Of all 114 studies, only one reported acute resuscitative management. Fifteen patients (14.7%) were sensitized prior to reconstructive transplantation with an 80% incidence of acute rejection in the first post-operative year. Seven patients demonstrated graft vasculopathy, only one of whom had demonstrated panel reactive antibodies. Conclusion Currently employed acute management strategies predispose to the development of anti-HLA antibodies, adding to the already complex immunological challenge of VCA. Early appropriate care is warranted in patients with extensive soft tissue loss where the resuscitative needs should be balanced against strategies to mitigate the immunological burden, particularly as reconstructive transplantation becomes a feasible option for future soft tissue coverage. Take-home message Acute resuscitative management may sensitise potential transplant recipients following major soft tissue injury. Early appropriate care is warranted.

Background Clinical genetics is a small specialty with around 70 trainees nationally. New trainees traditionally have a period of observing clinics led by consultants and experienced genetic counsellors before leading their own clinic. This is an important time in which they learn practical and communication skills with respect to approaching a consultation, however, the experience can be variable dependent on the centre. In light of the coronavirus pandemic, knowing that many new trainees would not be able to access this vital induction period, we devised a virtual induction programme. Methods A group of clinical geneticists from three UK centres, including GOSH, worked in collaboration with the GOSH Clinical Simulation Team to devise and deliver a programme that would be accessible to all new trainees. Important topics for discussion were agreed; example consultations were filmed, with the help of actors; and trainee simulations were planned. Results The virtual induction runs live over two days, with homework, in the form of the filmed consultations that can be accessed at any time. The first day has been completed, delivering training to around 20 new trainees. The feedback we have received from both trainees and training programme directors has been overwhelmingly positive. Discussion Given the ongoing impact of the coronavirus pandemic, creative ways of delivering training are flourishing. We have created a bank of videos and presentations, as well as a template for future induction sessions, ensuring a basic level of equity between trainees at different genetics centres. Conclusion Virtual induction tools are a valuable and vital addition to new trainee induction to ensure equity of training, both during the current pandemic and beyond. This approach would work very well on a national level for other small specialties; or on a regional or local level for larger specialties.

Introduction Vascularised composite allotransplantation (VCA) permits like-for-like reconstruction following extensive soft tissue injuries. The initial management of extensive soft tissue injury can lead to the development of anti-HLA antibodies through injury-related factors, transfusion and cadaveric grafting. The role of antibody-mediated rejection, donor-specific antibody formation and graft rejection in the context of VCA remains unclear. This systematic review aimed to determine whether pre-transplant management strategies influence immunological outcome following VCA. Methods A systematic review of MEDLINE, EMBASE and CINAHL using a PRISMA-compliant methodology up to February 2019 was conducted. Pre-transplant, procedural and long-term outcome data were collected and recorded for all VCA recipients on an individual patient basis. Results The search revealed 3,847 records of which 114 met inclusion criteria and reported clinical data related to 100 patients who underwent 129 VCA transplants. Trauma (50%) and burns (15%) were the most frequent indications for VCA. Of all 114 studies, only one reported acute resuscitative management. Fifteen patients were sensitised prior to reconstructive transplantation with an 80%%incidence of acute rejection in the first post-operative year. Seven patients demonstrated graft vasculopathy, only one of whom had demonstrated panel reactive antibodies. Conclusions Currently employed acute management strategies may predispose to the development of anti-HLA antibodies, adding to the already complex immunological challenge of VCA. To determine whether association between pre-transplant management and outcomes exists, further refinement of international registries is required.

Aims Dermal preservation during acute burn excision is key to obtaining superior healing/scar outcomes, however, determining the most appropriate excision tool is an ongoing challenge. Novel tool development means the knife is no longer our only option, yet for the majority it remains the gold standard. This systematic review aims to evaluate evidence for burns excision approaches (knife/hydrosurgery/enzymatic). Methods CENTRAL, EMBASE, MEDLINE (1946–2017) were searched with MeSH terms: ‘debridement’, ‘burns’, ‘sharp’, ‘enzymatic’, ‘hydrosurgery’. Relevant randomised control trials (RCTs)/non-randomised controlled case series/trials were extracted/analysed. In vitro/burn non-specific studies were excluded. Main methodological parameters were intervention/excision efficacy. Results Eighteen articles met inclusion criteria (n = 7148): three were RCTs, involving comparator enzymatic (NexoBrid™ (EDNX)) or hydrosurgical (Versajet™) excision to surgical Standard of Care. Both showed statistically significant decreased need for excisional excision and auto-grafting by viable tissue preservation allowing spontaneous healing by epithelialisation. Conclusion Level 1 Evidence comparing excision modalities for acute burns is sparse. Although early excision with a knife is still often considered best practice, there is no tool choice consensus or robust comparison with alternate, possibly superior, tools. EDNX or Versajet™ should be considered alternatively. Further RCTs are indicated, with regards final scar outcomes and to allow consensus within current evidence.

Women who inherit a mutated copy of the BRCA gene have a higher lifetime risk of developing breast cancer. No large epidemiological studies exist looking at BRCA mutation carriers in UK populations. All patients with BRCA1/BRCA2 mutation identified between 1995 and 2015 were included. Individuals were identified from a prospectively gathered data base. Genetics case-notes were obtained and retrospective analysis performed. 581 female BRCA mutation carriers were identified with a median age of 34 (18-81) at the time of testing. Of the 301 women who underwent diagnostic testing (symptomatic) 246 had been diagnosed with breast cancer, 89 with ovarian cancer and 37 had both at time of testing. Median age at diagnostic test was 51 (25-81). 33% of women underwent risk-reducing mastectomies (RRM); median age at surgery 45. This compares with 37% of women in this diagnostic group who underwent Risk-reducing bilateral salpingo-oopherectomies (RRBSO) at a median age of 46. Two hundred and eighty women underwent predictive testing (family history, asymptomatic), median age 36 (18-81). 34% of women in this predictive group underwent RRM, median age 37. There was a 29% uptake of RRBSO (median age 44 years). Fifteen women (5%) developed breast cancer after being tested; none of these had undergone RRS. This unique study of all BRCA mutation carriers in Wales shows considerable variation in uptake of RRS. The decision to undergo RRS is complex and involves a number of factors, including a woman's age and life stage. As BRCA testing becomes more frequent and more gene mutation carriers are identified there will be significant implications for service allocation, screening demands, and provision of risk-reducing surgery for this high-risk patient group.

Early debridement and/or eschar removal is regarded as a significant step in the treatment of deep partial and full thickness burns. It aims to control wound bioburden and allows early wound closure by conservative treatment or skin grafting. Preservation of viable dermis accompanied by early wound closure, is regarded as a necessary step to reduce scar related complication, e.g. functional limitations and/or unaesthetic scar formation. Aside from the classical techniques of surgical excision as tangential excision for eschar removal, hydro-surgery, maggot therapy, laser, enzymatic debridement have been described as additional techniques in the burn surgeon's armamentarium. It is widely accepted that early eschar removal within 72h improves the outcome of burn wound treatment by reducing bacterial wound colonization, infection and length of hospital stay. In contrast, the right technique for eschar removal is still a matter of debate. There is increasing evidence that enzymatic debridement is a powerful tool to remove eschar in burn wounds, reducing blood loss, the need for autologous skin grafting and the number of wounds requiring surgical excision. In order to assess the role and clinical advantages of enzymatic debridement by a mixture of proteolytic enzymes enriched in Bromelain (Nexobrid®) beyond the scope of the literature and in view of users' experience, a European Consensus Meeting was scheduled. The aim was to provide statements for application, based on the mutual experience of applying enzymatic debridement in more than 500 adult and pediatric patients by the consensus panelists. Issues to be addressed were: indications, pain management and anesthesia, timing of application, technique of application, after-intervention care, skin grafting after enzymatic debridement, blood loss, training strategies and learning curve and areas of future research needs. Sixty-eight (68) consensus statements were provided for the use of enzymatic debridement. The degree of consensus was remarkably high, with a unanimous consensus in 88.2% of statements, and lowest degree of consensus of 70% in only 3 statements. This consensus document may serve as preliminary guideline for the use of enzymatic debridement with user-oriented recommendations until further evidence and systematic guidelines are available.

After giving a brief summary of the scientific literature on altruism and empathy—a capacity necessary for altruism—I focus on a scientific paradigm, the face-to-face still face, and what insights ...

Background Colorectal cancer (CRC) is the most common cancer affecting both men and women. Survivors of CRC often experience various physical and psychological effects arising from CRC and its treatment. These effects may last for many years and adversely affect QoL, and they may not be adequately addressed by standard specialist-based follow-up. Optimal management of these effects should harness the expertise of both primary care and specialist care. Shared models of care (involving both the patient’s primary care physician [PCP] and specialist) have the potential to better support survivors and enhance health system efficiency. Methods/design SCORE (Shared care of Colorectal cancer survivors) is a multisite randomised controlled trial designed to optimise and operationalise a shared care model for survivors of CRC, to evaluate the acceptability of the intervention and study processes, and to collect preliminary data regarding the effects of shared care compared with usual care on a range of patient-reported outcomes. The primary outcome is QoL measured using the European Organisation for Research and Treatment of Cancer QLQ-C30 questionnaire. Secondary outcomes are satisfaction with care, unmet needs, continuity of care and health resource use. The shared care model involves replacement of two routine specialist follow-up visits with PCP visits, as well as the provision of a tailored survivorship care plan and a survivorship booklet and DVD for CRC survivors. All consenting patients will be randomised 1:1 to either shared care or usual care and will complete questionnaires at three time points over a 12-month period (baseline and at 6 and 12 months). Health care resource use data will also be collected and used to evaluate costs. Discussion The evaluation and implementation of models of care that are responsive to the holistic needs of cancer survivors while reducing the burden on acute care settings is an international priority. Shared care between specialists and PCPs has the potential to enhance patient care and outcomes for CRC survivors while offering improvements in health care resource efficiency. If the findings of the present study show that the shared care intervention is acceptable and feasible for CRC survivors, the intervention may be readily expanded to other groups of cancer survivors. Trial registration Australian New Zealand Clinical Trials Registry, ACTRN12617000004369p. Registered on 3 January 2017; protocol version 4 approved 24 February 2017. Electronic supplementary material The online version of this article (doi:10.1186/s13063-017-2245-4) contains supplementary material, which is available to authorized users.

Purpose Conflicts of interest (COIs) are important ethical concerns because they may affect scientific decision making, research integrity, and the safety and fairness of studies. No research to date has examined COIs of single institutional review boards (sIRBs), which are now mandated by the National Institutes of Health, and will be by the revised Common Rule in 2020, for all multisite research. This study investigated how different types of sIRBs manage their own COIs by documenting existing processes for and comparing commercial, government, and academic sIRBs. Method One hundred three personnel from 20 commercial, government, or academic sIRBs participated in semistructured interviews about their processes for and experiences with managing COIs when conducting multisite research review. Results Variability in COI management policies exist across types of sIRBs. Commercial sIRBs were aware of their own COIs given their for-profit model, and managed them by using firewalls, relying on external reviewers, and turning down potential clients. Government sIRBs described unique COIs stemming from the same agency funding the sIRB and the research being reviewed. They addressed these by discussing concerns about COIs, using firewalls, relying on nonaffiliated reviewers, and having broad COI policies. In contrast to commercial and government sIRBs, academic sIRBs did not report any specific policies to manage their COIs, which are similar to those of local IRBs. Conclusions As sIRBs become increasingly common, researchers will need to weigh the different COIs inherent to each type of sIRB. Additionally, academic sIRBs may consider implementing specific policies for managing their COIs.

Introduction Workforce planning is an essential component of organizing any health service. Centralization of burns services pools expertise, although trainees can struggle to achieve adequate exposure to burns training. We aim to review current staffing levels and predict the future consultant numbers required for UK services to remain staffed with appropriately trained surgeons. Methods We have compiled a database of all UK burns consultants. Basic demographic data, such as age and sex, were collated. Projected UK population data have been used to estimate whether the number of patients under the care of the UK burns network will change in the coming years. Access to burns fellowship training has also been factored in. Results There are 34 burns facilities in the United Kingdom and 86 burns consultants. On average, these consultants are 13 years from retirement age. 22 will reach this age within the next decade. During this time, the UK population is expected to increase by 10%, translating to approximately another 6 consultant posts. Since there are only 2 UK recognized burns fellowships, many of the required consultants will have to seek training abroad. Conclusions Workforce planning is essential to avoid a short fall in the number of upcoming burns consultants. Plans must be in place to anticipate additional workload with a 10% population rise. With the current struggles of NHS funding, a comprehensive review of burns workforce planning should be undertaken to ensure that sufficient numbers of trainees are completing appropriate burns-specific training and are ready to fill these posts.

We demonstrate the use of the near-infrared attenuation coefficient, measured using optical coherence tomography (OCT), in longitudinal assessment of hypertrophic burn scars undergoing fractional laser treatment. The measurement method incorporates blood vessel detection by speckle decorrelation and masking, and a robust regression estimator to produce 2D en face parametric images of the attenuation coefficient of the dermis. Through reliable co-location of the field of view across pre- and post-treatment imaging sessions, the study was able to quantify changes in the attenuation coefficient of the dermis over a period of ~20 weeks in seven patients. Minimal variation was observed in the mean attenuation coefficient of normal skin and control (untreated) mature scars, as expected. However, a significant decrease (13 ± 5%, mean ± standard deviation) was observed in the treated mature scars, resulting in a greater distinction from normal skin in response to localized damage from the laser treatment. By contrast, we observed an increase in the mean attenuation coefficient of treated (31 ± 27%) and control (27 ± 20%) immature scars, with numerical values incrementally approaching normal skin as the healing progressed. This pilot study supports conducting a more extensive investigation of OCT attenuation imaging for quantitative longitudinal monitoring of scars. (Figure presented.) En face 2D OCT attenuation coefficient map of a treated immature scar derived from the pre-treatment (top) and the post-treatment (bottom) scans. (Vasculature (black) is masked out.) The scale bars are 0.5 mm.

Clinical Genetics services provide a diagnostic, counselling and genetic testing service for children and adults affected by, or at risk of, a genetic condition, most of which are rare, and/or genetically heterogeneous. Appropriate triage of referrals is crucial to ensure that the most urgent referrals are seen as quickly as possible, without negatively impacting the waiting times of less urgent cases. We aimed to examine triage practice in six Clinical Genetic centres across the United Kingdom and Ireland. Thirteen simulated referrals were drafted based on common referrals to Clinical Genetics. Copies of each referral were forwarded to each centre, where 10 nominated clinicians were asked to triage each referral. Triaged referrals were returned to the coordinating author for analysis. An electronic questionnaire was contemporaneously completed by clinical leads in each unit to gather local demographic details and local operating procedures relevant to triage. Widespread inconsistencies were noted both within and between units, with respect to the acceptance of referrals to the services, prioritisation and designated clinic type. Referral rates, staffing levels and waiting lists varied widely between units. Inconsistencies observed between units are likely influenced by a number of factors, including staffing levels, referral rates and average family size. Inconsistency within units likely reflects the complex nature of many Clinical Genetic referrals, and triage guidelines should help improve decision-making in this setting.

New federal policies require single IRB review for multisite studies, but many questions remain about how these IRBs will use local knowledge. The findings from our study, the first to examine how single IRBs perceive needs for local knowledge, reveal several challenges. Study respondents identified four potentially relevant types of local knowledge: about culture and linguistics, about geography and socioeconomics, about the researchers, and about the institutions. Such knowledge can potentially be obtained through local sites, but single IRBs may be unaware of potentially relevant local information, and lack of informal relationships may impede single IRBs’ reviews and interactions with researchers. While a recent, commonly used, standardized single‐IRB form asks three basic questions about local information, our findings suggest potential needs for additional information and, thus, have important implications for practice, policy, and research.

The new National Institutes of Health (NIH) Policy on the Use of a Single Institutional Review Board (sIRB) for Multi-Site Research was adopted primarily to simplify and speed the review of complex multisite clinical trials. However, speeding review requires overcoming a number of obstacles. Perhaps the most substantial obstacle is the time and effort needed to develop reliance agreements among the participating sites. We conducted 102 semistructured interviews with sIRB personnel, including directors, chairs, reviewers, and staff, from 20 IRBs that acted as sIRBs for multisite research, including 6 commercial/independent sIRBs, and 10 university-based academic and 4 federal sIRBs. Almost without exception, the interviewees agreed that reliance agreements were complex, difficult to develop, and time-consuming. A major problem for relying sites was that different agreements specified different responsibilities for the relying sites. Attitudes differed about whether these problems will be resolved as IRB staff and managers become more experienced with sIRBs. However it is clear that the process of developing reliance agreements must be simplified. Federal assistance in standardizing at least some sections of reliance agreements might reduce the difficulties involved.

This study presents the first in vivo longitudinal assessment of scar vasculature in ablative fractional laser treatment using optical coherence tomography (OCT). A method based on OCT speckle decorrelation was developed to visualize and quantify the scar vasculature over the treatment period. Through reliable co-location of the imaging field of view across multiple imaging sessions, and compensation for motion artifact, the study was able to track the same scar tissue over a period of several months, and quantify changes in the vasculature area density. The results show incidences of occlusion of individual vessels 3 days after the first treatment. The subsequent responses ˜20 weeks after the initial treatment show differences between immature and mature scars. Image analysis showed a distinct decrease (25 ± 13%, mean ± standard deviation) and increase (19 ± 5%) of vasculature area density for the immature and mature scars, respectively. This study establishes the feasibility of OCT imaging for quantitative longitudinal monitoring of vasculature in scar treatment. En face optical coherence tomography vasculature images pre-treatment (top) and ˜20 weeks after the first laser treatment (bottom) of a mature burn scar. Arrows mark the same vessel pattern.