Identifying Epidermolysis Bullosa Patient Needs and Perceived Treatment Benefits:An Explorative Study Using the Patient Benefit Index

Epidermolysis bullosa (EB) is a genetic blistering skin condition for which no cure exists. Symptom alleviation and quality of life are therefore central to EB care. This study aimed to gain insight into EB patient needs and benefits from current clinical care. Two questionnaires were administered cross-sectionally to adult EB patients at the Dutch expertise centre for blistering diseases. Patient needs and benefits were analyzed using the patient benefit index survey (PBI-S). Ancillary data were compiled pertaining to self-reported EB severity, pain and pruritus, as well as current and previous treatments. In total, 104 participants were included (response rate 69.8%). Sixty-eight participants comprised the analyzed cohort (n = 36 omitted from analysis). The needs given the highest importance were to get better skin quickly (64.7%) and to be healed of all skin alterations (61.8%). A positive correlation between pain and EB severity and the importance of most needs was observed. Minimal clinically important differences within the PBI-S, relating to reported benefits from clinical care, were reported by 60.3% of the cohort. This study highlights a discrepancy between patient needs and feasible treatment outcomes. Utilizing the PBI-S in conjunction with well-established multidisciplinary care may catalyze the process of tailoring treatments to the needs of individual patients

Reef state and performance as indicators of cumulative impacts on coral reefs

Coral bleaching, cyclones, outbreaks of crown-of-thorns seastar, and reduced water quality (WQ) threaten the health and resilience of coral reefs. The cumulative impacts from multiple acute and chronic stressors on “reef State” (i.e., total coral cover) and “reef Performance” (i.e., the deviation from expected rate of total coral cover increase) have rarely been assessed simultaneously, despite their management relevance. We evaluated the dynamics of coral cover (total and per morphological groups) in the Central and Southern Great Barrier Reef over 25 years, and identified and compared the main environmental drivers of State and Performance at the reef level (i.e. based on total coral cover) and per coral group. Using a combination of 25 environmental metrics that consider both the frequency and magnitude of impacts and their lagged effects, we find that the stressors that correlate with State differed from those correlating with Performance. Importantly, we demonstrate that WQ metrics better predict Performance than State. Further, inter-annual dynamics in WQ (here available for a subset of the data) improved the explanatory power of WQ metrics on Performance over long-term WQ averages. The lagged effects of cumulative acute stressors, and to a lesser extent poor water quality, correlated negatively with the Performance of some but not all coral groups. Tabular Acropora and branching non-Acropora were the most affected by water quality demonstrating that group-specific approaches aid in the interpretation of monitoring data and can be crucial for the detection of the impact of chronic pressures. We highlight the complexity of coral reef dynamics and the need of evaluating Performance metrics in order to prioritise local management interventions

'Magic coins' and 'magic squares': the discovery of astrological sigils in the Oldenburg Letters

Enclosed in a 1673 letter to Henry Oldenburg were two drawings of a series of astrological sigils, coins and amulets from the collection of Strasbourg mathematician Julius Reichelt (1637–1719). As portrayals of particular medieval and early modern sigils are relatively rare, this paper will analyse the role of these medals in medieval and early modern medicine, the logic behind their perceived efficacy, and their significance in early modern astrological and cabalistic practice. I shall also demonstrate their change in status in the late seventeenth century from potent magical healing amulets tied to the mysteries of the heavens to objects kept in a cabinet for curiosos. The evolving perception of the purpose of sigils mirrored changing early modern beliefs in the occult influences of the heavens upon the body and the natural world, as well as the growing interests among virtuosi in collecting, numismatics and antiquities

Cannabinoid use and effects in patients with epidermolysis bullosa:an international cross-sectional survey study

Abstract Background Epidermolysis bullosa (EB) patient anecdotes and case reports indicate that cannabinoid-based medicines (CBMs) may alleviate pain and pruritus and improve wound healing. CBM use has not been characterized in the EB patient population. Objectives To evaluate CBM use among EB patients, including CBM types, effects on symptoms (e.g., pain and pruritus), disease process (e.g., blistering, wounds, and inflammation), well-being (e.g., sleep, appetite) and concomitant medications. Methods English-speaking EB patients or caregivers completed an online international, anonymous, cross-sectional survey regarding CBM use. Respondents reported the types of CBMs, subsequent effects including perceived EB symptom alteration, changes in medication use, and side effects. Results Seventy-one EB patients from five continents reported using or having used CBMs to treat their EB. Missing question responses ranged between 0 (0%) and 33 (46%). Most used more than one CBM preparation (mean: 2.4 ± 1.5) and route of administration (mean: 2.1 ± 1.1). Topical and ingested were the most common routes. Pain and pruritus were reported retrospectively to decrease by 3 points (scale: 0–10; p < 0.001 for both) after CBM use. Most reported that CBM use improved their overall EB symptoms (95%), pain (94%), pruritus (91%) and wound healing (81%). Most participants (79%) reported decreased use of pain medications. The most common side-effect was dry mouth (44%). Conclusions CBMs improve the perception of pain, pruritus, wound healing, and well-being in EB patients and reduced concomitant medication use. Nevertheless, a direct relation between the use of CBMs and reduction of the above-mentioned symptoms cannot be proven by these data. Therefore, future controlled studies using pharmaceutically standardised CBM preparations in EB are warranted to delineate the risks and benefits of CBMs

Impaired recovery of the Great Barrier Reef under cumulative stress

Corals of the Great Barrier Reef (GBR) have declined over the past 30 years. While reef state depends on the balance between disturbance and recovery, most studies have focused on the effects of disturbance on reef decline. We show that coral recovery rates across the GBR declined by an average of 84% between 1992 and 2010. Recovery was variable: Some key coral types had close to zero recovery by the end of that period, whereas some reefs exhibited high recovery. Our results indicate that coral recovery is sensitive to chronic but manageable pressures, and is suppressed for several years following acute disturbances. Loss of recovery capacity was partly explained by the cumulative effects of chronic pressures including water quality, warming, and sublethal effects of acute disturbances (cyclones, outbreaks of crown-of-thorns starfish, and coral bleaching). Modeled projections indicate that recovery rates can respond rapidly to reductions in acute and chronic stressors, a result that is consistent with fast recovery observed on some reefs in the central and southern GBR since the end of the study period. A combination of local management actions to reduce chronic disturbances and global action to limit the effect of climate change is urgently required to sustain GBR coral cover and diversity

Accounting for albedo change to identify climate-positive tree cover restoration

Restoring tree cover changes albedo, which is the fraction of sunlight reflected from the Earth’s surface. In most locations, these changes in albedo offset or even negate the carbon removal benefits with the latter leading to global warming. Previous efforts to quantify the global climate mitigation benefit of restoring tree cover have not accounted robustly for albedo given a lack of spatially explicit data. Here we produce maps that show that carbon-only estimates may be up to 81% too high. While dryland and boreal settings have especially severe albedo offsets, it is possible to find places that provide net-positive climate mitigation benefits in all biomes. We further find that on-the-ground projects are concentrated in these more climate-positive locations, but that the majority still face at least a 20% albedo offset. Thus, strategically deploying restoration of tree cover for maximum climate benefit requires accounting for albedo change and we provide the tools to do so

An Assessment of the Representation of Ecosystems in Global Protected Areas Using New Maps of World Climate Regions and World Ecosystems

Representation of ecosystems in protected area networks and conservation strategies is a core principle of global conservation priority setting approaches and a commitment in Aichi Target 11 of the Convention on Biological Diversity. The 2030 Sustainable Development Goals (SDGs) explicitly call for the conservation of terrestrial, freshwater, and marine ecosystems. Accurate ecosystem distribution maps are required to assess representation of ecosystems in protected areas, but standardized, high spatial resolution, and globally comprehensive ecosystem maps have heretofore been lacking. While macroscale global ecoregions maps have been used in global conservation priority setting exercises, they do not identify distinct localized ecosystems at the occurrence (patch) level, and instead describe large ecologically meaningful areas within which additional conservation planning and management are necessary. We describe a new set of maps of globally consistent climate regions and ecosystems at a much finer spatial resolution (250 m) than existing ecological regionalizations. We then describe a global gap analysis of the representation of these ecosystems in protected areas. The new map of terrestrial World Ecosystems was derived from the objective development and integration of 1) global temperature domains, 2) global moisture domains, 3) global landforms, and 4) 2015 global vegetation and land use. These new terrestrial World Ecosystems do not include either freshwater or marine ecosystems, but analog products for the freshwater and marine domains are in development. A total of 431 World Ecosystems were identified, and of these a total of 278 units were natural or semi-natural vegetation/environment combinations, including different kinds of forestlands, shrublands, grasslands, bare areas, and ice/snow regions. The remaining classes were different kinds of croplands and settlements. Of the 278 natural and semi-natural classes, 9 were not represented in global protected areas with a strict biodiversity conservation management objective (IUCN management categories I-IV), and an additional 206 were less than 8.5% protected (half way to the 17% Aichi Target 11 goal). Forty four classes were between 8.5% and 17% protected (more than half way towards the Aichi 17% target), and only 19 classes exceeded the 17% Aichi target. However, when all protected areas (IUCN management categories I-VI plus protected areas with no IUCN designation) were included in a separate global gap analysis, representation of ecosystems increases substantially, with a third of the ecosystems exceeding the 17% Aichi target, and another third between 8.5% and 17%. The overall protection (representation) of global ecosystems in protected areas is considerably less when assessed using only strictly conserved protected areas, and more if all protected areas are included in the analysis. Protected area effectiveness should be included in further evaluations of global ecosystem protection. The ecosystems with the highest representation in protected areas were often bare or sparsely vegetated and found in inhospitable environments (e.g. cold mountains, deserts), and the eight most protected ecosystems were all snow and ice ecosystems. In addition to the global gap analysis of World Ecosystems in protected areas, we report on the representation results for the ecosystems in each biogeographic realm (Neotropical, Nearctic, Afrotropical, Palearctic, Indomalayan, Australasian, and Oceania)

Savanna fire management can generate enough carbon revenue to help restore Africa's rangelands and fill protected area funding gaps

Many savanna-dependent species in Africa including large herbivores and apex predators are at increasing risk of extinction. Achieving effective management of protected areas (PAs) in Africa where lions live will cost an estimated US$>1–2 billion/year in new funding. We explore the potential for fire-management-based carbon financing programs to fill this funding gap and benefit degrading savanna ecosystems. We demonstrate how introducing early dry season fire management programs could produce potential carbon revenues (PCRs) from either a single carbon financing method (avoided emissions) or from multiple sequestration methods ranging from US$ 59.6–655.9 million/year (at US$5/ton) or US$ 155.0 million/year to US$1.7 billion/year (at US$ 13/ton). We highlight variable but significant PCRs for savanna PAs from US$ 1.5–44.4 million/year per PA. We suggest investing in fire management programs to jump-start the United Nations Decade of Ecological Restoration to help restore degraded African savannas and conserve imperiled keystone herbivores and apex predators.https://www.cell.com/one-earth/homeam2022Zoology and Entomolog