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  • Optimal omegas - barriers and novel methods to narrow omega-3 gaps. A narrative review.

    Derbyshire, Emma J; Birch, Catherine S; Bonwick, Graham A; English, Ashley; Metcalfe, Phil; Li, Weili (2024-02-02)
    Dietary intakes of omega-3 long chain polyunsaturated fatty acids (O3LC-PUFAs) such as eicosapentaenoic and docosahexaenoic acid are central to development and health across the life course. O3LC-PUFAs have been linked to neurological development, maternal and child health and the etiology of certain non-communicable diseases including age-related cognitive decline, cardiovascular disease, and diabetes. However, dietary inadequacies exist in the United Kingdom and on a wider global scale. One predominant dietary source of O3LC-PUFAs is fish and fish oils. However, growing concerns about overfishing, oceanic contaminants such as dioxins and microplastics and the trend towards plant-based diets appear to be acting as cumulative barriers to O3LC-PUFAs from these food sources. Microalgae are an alternative provider of O3LC-PUFA-rich oils. The delivery of these into food systems is gaining interest. The present narrative review aims to discuss the present barriers to obtaining suitable levels of O3LC-PUFAs for health and wellbeing. It then discusses potential ways forward focusing on innovative delivery methods to utilize O3LC-PUFA-rich oils including the use of fortification strategies, bioengineered plants, microencapsulation, and microalgae. [Abstract copyright: Copyright © 2024 Derbyshire, Birch, Bonwick, English, Metcalfe and Li.]
  • Breaking the Boundaries Collective – A Manifesto for Relationship-based Practice

    Darley, D.; Blundell, P.; Cherry, L.; Wong, J.O.; Wilson, A.M.; Vaughan, S.; Vandenberghe, K.; Taylor, B.; Scott, K.; Ridgeway, T.; et al. (Informa UK Limited, 2024-02-23)
  • Responding well to Spiritual Abuse: practice implications for counselling and psychotherapy

    Oakley, Lisa; orcid: 0000-0001-8909-7889; Kinmond, Kathryn; orcid: 0000-0001-8105-6011; Blundell, Peter; orcid: 0000-0003-4392-0600 (Informa UK Limited, 2024-02-22)
  • Who is at risk? Adults with intellectual disability at risk of admission to mental health inpatient care

    Durand, Marianne; orcid: 0009-0007-6396-878X; Nathan, Rajan; orcid: 0000-0003-2780-6170; Holt, Sophie; Nall‐Evans, Sharleen; orcid: 0009-0001-1697-5473; Woodrow, Ceri; orcid: 0000-0003-3325-224X (Wiley, 2024-02-21)
    AbstractBackgroundNHS England's Transforming Care agenda aims to reduce the number of adults with intellectual disabilities and autistic adults in mental health hospitals. The aim was to understand the demographic and clinical characteristics of those most at risk of admission.MethodA cohort, retrospective study of adults using community intellectual disability services in the North West of England from 2018 to 2022 was undertaken.ResultsWe compared 211 adults at imminent risk of admission to a mental health hospital and 249 at significant (but not imminent) risk on a validated risk stratification tool. Individuals at significant risk were more likely to have moderate intellectual disability. Individuals at imminent risk were more likely to have diagnoses of mild intellectual disability, autism, personality disorder, or psychosis.ConclusionBy furthering our understanding of the clinical characteristics of those most at risk of admission, the findings inform more appropriate targeting of resources.
  • Lossless Encoding of Time-Aggregated Neuromorphic Vision Sensor Data Based on Point-Cloud Compression

    Adhuran, Jayasingam; orcid: 0000-0002-1477-4395; Khan, Nabeel; Martini, Maria G. (MDPI AG, 2024-02-21)
    Neuromorphic Vision Sensors (NVSs) are emerging sensors that acquire visual information asynchronously when changes occur in the scene. Their advantages versus synchronous capturing (frame-based video) include a low power consumption, a high dynamic range, an extremely high temporal resolution, and lower data rates. Although the acquisition strategy already results in much lower data rates than conventional video, NVS data can be further compressed. For this purpose, we recently proposed Time Aggregation-based Lossless Video Encoding for Neuromorphic Vision Sensor Data (TALVEN), consisting in the time aggregation of NVS events in the form of pixel-based event histograms, arrangement of the data in a specific format, and lossless compression inspired by video encoding. In this paper, we still leverage time aggregation but, rather than performing encoding inspired by frame-based video coding, we encode an appropriate representation of the time-aggregated data via point-cloud compression (similar to another one of our previous works, where time aggregation was not used). The proposed strategy, Time-Aggregated Lossless Encoding of Events based on Point-Cloud Compression (TALEN-PCC), outperforms the originally proposed TALVEN encoding strategy for the content in the considered dataset. The gain in terms of the compression ratio is the highest for low-event rate and low-complexity scenes, whereas the improvement is minimal for high-complexity and high-event rate scenes. According to experiments on outdoor and indoor spike event data, TALEN-PCC achieves higher compression gains for time aggregation intervals of more than 5 ms. However, the compression gains are lower when compared to state-of-the-art approaches for time aggregation intervals of less than 5 ms.
  • Back into the light: The unveiling of Chester Royal Infirmary’s stained-glass windows at the University of Chester

    Griffiths, Sarah; Chatterton, Claire; University of Chester; Open University (UK Association for the History of Nursing, 2023-12)
    On 7 June 2023, the University of Chester’s Faculty of Health, Medicine and Society (FHMS) Historical Society hosted an event at the University’s Wheeler Building, when four stained glass windows from the former Chester Royal Infirmary were unveiled in their new home
  • The Influence of COVID-19 Disease on Pre-Analytical Blood Sample Haemolysis Rates in Three Acute Medical Units: An Interrupted Time Series Analysis

    Makhumula-Nkhoma, Nellie; Teggert, Andrew K.; Young, John, S.; University of Chester; Teesside University; James Cook University Hospital (IFCC Communications and Publications Division, 2023-04-18)
    The COVID-19 pandemic impacted delivery of health services. The aim of our study was to determine the impact of COVID-19 disease on pre-analytical blood sample haemolysis by modelling the daily haemolysis rates variations pre and post COVID-19 infections. Ethics approval was obtained prior to study commencing. Interrupted Time Series data analysis was conducted on UK National Health Service Acute Admissions Unit 25-month (1 February 2019 to 28 February 2021) biochemistry (total and haemolysed) blood sample dataset. Interruption was set on 23 March 2021, the start of the first UK lockdown. Daily haemolysis rate (% samples haemolysed) data were fitted with a spline curve to determine influence of haemolysis rates on short or medium-term temporal trends. Linear regression was performed so as to determine long-term temporal trends pre- and post-intervention. There were 32,316 biochemistry blood sample results: 19,058 pre and 13,258 (342 days) from the post-intervention period. Overall median daily haemolysis rate was 7.3% (range: 0-30.6%), 7.7% pre-intervention versus 6.5% post-intervention (p<0.0001). The proportion of haemolysis cases negatively correlated with the number of samples processed (rho=0.09; p=0.01). The pre-intervention slope was -1.70 %.y-1, y intercept 9.04%; post-intervention slope was -1.88%.y-1, y intercept was 10.2%; with no difference in either the slope (p=0.87) or intercept (p=0.16). There was no association between short-term variation in haemolysis rates with changes in practice due to COVID-19 disease and the disease itself. The negative correlation between haemolysis rate and the number of samples processed highlights the importance of continued venepuncture practice to facilitate haemolysis rate reduction.
  • Macclesfield Baths and Washhouses and its patrons in the nineteenth century

    Griffiths, Sarah; University of Chester (Cheshire Local History Association, 2021-12-31)
    The East Cheshire market town of Macclesfield had grown to become the leading centre of the English silk industry by the mid nineteenth century and this resulted in severe pressure on the town’s inadequate services. One element of the national campaign to improve sanitary conditions in urban areas was the public baths and washhouses movement from the 1840s, which resulted in the Public Baths and Wash-houses Acts in 1846 and 1847. Macclesfield’s Baths and Washhouses opened in January 1850 and it was one of the first provincial towns after Liverpool to provide such facilities. This article will therefore explore the national baths and washhouses movement, the impact of industrialisation on living conditions in Macclesfield, the history of the town’s Baths and Washhouses in the nineteenth century, the people active in its development and the range of motives which may have encouraged their support for this early addition to the public services for inhabitants.
  • The Fall of the House of Wynnstay: The 1885 Election in East Denbighshire

    Peters, Lisa; University of Chester (University of Wales Press, 2021-06-01)
    This article discusses the 1885 election in East Denbighshire when the Williams-Wynn family of Wynnstay lost the parliamentary seat that the family had represented for over 170 years. The election took place amidst the backdrop of legislative changes to corrupt practices, the electorate, and changing constituency boundaries. Conservative and Liberal party organisation in East Denbighshire is discussed.
  • The role of the local newspaper during World War One: An important link between the home front and the battle front

    Peters, Lisa; University of Chester (Chadwyck-Healey, 2018)
    This article discusses the role of the local newspapers during World War One and argues that it provided a link between the home front and the battle front, in particular as a reminder of the home front, keeping up morale and encouraging recruitment, providing war news and descriptions of wartime experiences, helping to send gifts to soldiers, alleviating boredom, and creating a community of soldiers.
  • Trabant: Go with the legend

    Lowe, Austen; Stone, Mark (Drystone Radio, 2018-11-18)
    "The car is that mediation between state and society. If you look at when they finally opened the borders for people to go West, the Trabis also went with them." Modern Languages undergraduate Austen Lowe was invited to Drystone Radio's Backseat Driver show to discuss his research on the Trabant with Mark Stone. This radio broadcast outlines the misunderstandings surrounding GDR mobility. The conversation focusses on how the wooden and plastic car personifies the state in which it was made. The broadcast aims to draw parallels between production techniques in the GDR and the FRG, relating these methods to cars produced more recently in Zwickau. What did quality actually mean in the GDR and is the Trabant really a motoring legend?
  • Two independent proteomic approaches provide a comprehensive analysis of the synovial fluid proteome response to Autologous Chondrocyte Implantation

    Hulme, Charlotte; Wilson, Emma; Fuller, Heidi R.; Roberts, Sally; Richardson, James B.; Gallacher, Pete; Peffers, Mandy J.; Shirran, Sally L.; Botting, Catherine H.; Wright, Karina; et al. (BMC, 2018-05-02)
    Background: Autologous chondrocyte implantation (ACI) has a failure rate of approximately 20%, but it is yet to be fully understood why. Biomarkers are needed that can pre-operatively predict in which patients it is likely to fail, so that alternative or individualised therapies can be offered. We previously used label-free quantitation (LF) with a dynamic range compression proteomic approach to assess the synovial fluid (SF) of ACI responders and non-responders. However, we were able to identify only a few differentially abundant proteins at baseline. In the present study, we built upon these previous findings by assessing higher-abundance proteins within this SF, providing a more global proteomic analysis on the basis of which more of the biology underlying ACI success or failure can be understood. Methods: Isobaric tagging for relative and absolute quantitation (iTRAQ) proteomic analysis was used to assess SF from ACI responders (mean Lysholm improvement of 33; n = 14) and non-responders (mean Lysholm decrease of 14; n = 13) at the two stages of surgery (cartilage harvest and chondrocyte implantation). Differentially abundant proteins in iTRAQ and combined iTRAQ and LF datasets were investigated using pathway and network analyses. Results: iTRAQ proteomic analysis confirmed our previous finding that there is a marked proteomic shift in response to cartilage harvest (70 and 54 proteins demonstrating ≥ 2.0-fold change and p < 0.05 between stages I and II in responders and non-responders, respectively). Further, it highlighted 28 proteins that were differentially abundant between responders and non-responders to ACI, which were not found in the LF study, 16 of which were altered at baseline. The differential expression of two proteins (complement C1s subcomponent and matrix metalloproteinase 3) was confirmed biochemically. Combination of the iTRAQ and LF proteomic datasets generated in-depth SF proteome information that was used to generate interactome networks representing ACI success or failure. Functional pathways that are dysregulated in ACI non-responders were identified, including acute-phase response signalling. Conclusions: Several candidate biomarkers for baseline prediction of ACI outcome were identified. A holistic overview of the SF proteome in responders and non-responders to ACI  has been profiled, providing a better understanding of the biological pathways underlying clinical outcome, particularly the differential response to cartilage harvest in non-responders.
  • The impact of severe haemophilia and the presence of target joints on health-related quality-of-life

    O’Hara, Jamie; Walsh, Shaun; Camp, Charlotte; Mazza, Giuseppe; Carroll, Liz; Hoxer, Christina; Wilkinson, Lars; University of Chester; HCD Economics; University College London; The Haemophilia Society; Novo Nordisk (BMC, 2018-05-02)
    Background: Joint damage remains a major complication associated with haemophilia and is widely accepted as one of the most debilitating symptoms for persons with severe haemophilia. The aim of this study is to describe how complications of haemophilia such as target joints influence health-related quality of life (HRQOL). Methods: Data on hemophilia patients without inhibitors were drawn from the ‘Cost of Haemophilia across Europe – a Socioeconomic Survey’ (CHESS) study, a cost-of-illness assessment in severe haemophilia A and B across five European countries (France, Germany, Italy, Spain, and the UK). Physicians provided clinical and sociodemographic information for 1285 adult patients, 551 of whom completed corresponding questionnaires, including EQ-5D. A generalised linear model was developed to investigate the relationship between EQ-5D index score and target joint status (defined in the CHESS study as areas of chronic synovitis), adjusted for patient covariates including socio-demographic characteristics and comorbidities. Results: Five hundred and fifteen patients (42% of the sample) provided an EQ-5D response; a total of 692 target joints were recorded across the sample. Mean EQ-5D index score for patients with no target joints was 0.875 (standard deviation [SD] 0.179); for patients with one or more target joints, mean index score was 0.731 (SD 0.285). Compared to having no target joints, having one or more target joints was associated with lower index scores (average marginal effect (AME) -0.120; SD 0.0262; p < 0.000). Conclusions: This study found that the presence of chronic synovitis has a significant negative impact on HRQOL for adults with severe haemophilia. Prevention, early diagnosis and treatment of target joints should be an important consideration for clinicians and patients when managing haemophilia.
  • Association of apolipoprotein E gene polymorphisms with blood lipids and their interaction with dietary factors

    Shatwan, Israa M.; Winther, Kristian H.; Ellahi, Basma; Elwood, Peter; Ben-Shlomo, Yoav; Givens, Ian; Rayman, Margaret P.; Lovegrove, Julie A.; Vimaleswaran, Karani S.; University of Reading; King Abdulaziz University; University Hospital Denmark; University of Chester; University Hospital of Wales; University of Bristol; University of Surrey (BMC, 2018-04-30)
    Background: Several candidate genes have been identified in relation to lipid metabolism, and among these, lipoprotein lipase (LPL) and apolipoprotein E (APOE) gene polymorphisms are major sources of genetically determined variation in lipid concentrations. This study investigated the association of two single nucleotide polymorphisms (SNPs) at LPL, seven tagging SNPs at the APOE gene, and a common APOE haplotype (two SNPs) with blood lipids, and examined the interaction of these SNPs with dietary factors. Methods: The population studied for this investigation included 660 individuals from the Prevention of Cancer by Intervention with Selenium (PRECISE) study who supplied baseline data. The findings of the PRECISE study were further replicated using 1238 individuals from the Caerphilly Prospective cohort (CaPS). Dietary intake was assessed using a validated food-frequency questionnaire (FFQ) in PRECISE and a validated semi-quantitative FFQ in the CaPS. Interaction analyses were performed by including the interaction term in the linear regression model adjusted for age, body mass index, sex and country. Results: There was no association between dietary factors and blood lipids after Bonferroni correction and adjustment for confounding factors in either cohort. In the PRECISE study, after correction for multiple testing, there was a statistically significant association of the APOE haplotype (rs7412 and rs429358; E2, E3, and E4) and APOE tagSNP rs445925 with total cholesterol (P = 4 × 10− 4 and P = 0.003, respectively). Carriers of the E2 allele had lower total cholesterol concentration (5.54 ± 0.97 mmol/L) than those with the E3 (5.98 ± 1.05 mmol/L) (P = 0.001) and E4 (6.09 ± 1.06 mmol/L) (P = 2 × 10− 4) alleles. The association of APOE haplotype (E2, E3, and E4) and APOE SNP rs445925 with total cholesterol (P = 2 × 10− 6 and P = 3 × 10− 4, respectively) was further replicated in the CaPS. Additionally, significant association was found between APOE haplotype and APOE SNP rs445925 with low density lipoprotein cholesterol in CaPS (P = 4 × 10− 4 and P = 0.001, respectively). After Bonferroni correction, none of the cohorts showed a statistically significant SNP-diet interaction on lipid outcomes. Conclusion: In summary, our findings from the two cohorts confirm that genetic variations at the APOE locus influence plasma total cholesterol concentrations, however, the gene-diet interactions on lipids require further investigation in larger cohorts.
  • The relationship between target joints and direct resource use in severe haemophilia

    O’Hara, Jamie; Walsh, Shaun; Camp, Charlotte; Mazza, Giuseppe; Carroll, Liz; Hoxer, Christina; Wilkinson, Lars; University of Chester; HCD Economics, The Innovation Centre, Daresbury; University College London; The Haemophilia Society; Novo Nordisk A/S (SpringerOpen, 2018-01-16)
    Objectives Target joints are a common complication of severe haemophilia. While factor replacement therapy constitutes the majority of costs in haemophilia, the relationship between target joints and non drug-related direct costs (NDDCs) has not been studied. Methods Data on haemophilia patients without inhibitors was drawn from the ‘Cost of Haemophilia across Europe – a Socioeconomic Survey’ (CHESS) study, a cost assessment in severe haemophilia A and B across five European countries (France, Germany, Italy, Spain, and the United Kingdom) in which 139 haemophilia specialists provided demographic and clinical information for 1285 adult patients. NDDCs were calculated using publicly available cost data, including 12-month ambulatory and secondary care activity: haematologist and other specialist consultant consultations, medical tests and examinations, bleed-related hospital admissions, and payments to professional care providers. A generalized linear model was developed to investigate the relationship between NDDCs and target joints (areas of chronic synovitis), adjusted for patient covariates. Results Five hundred and thirteen patients (42% of the sample) had no diagnosed target joints; a total of 1376 target joints (range 1–10) were recorded in the remaining 714 patients. Mean adjusted NDDCs for persons with no target joints were EUR 3134 (standard error (SE) EUR 158); for persons with one or more target joints, mean adjusted NDDCs were EUR 3913 (SE EUR 157; average mean effect EUR 779; p < 0.001). Conclusions Our analysis suggests that the presence of one or more target joints has a significant impact on NDDCs for patients with severe haemophilia, ceteris paribus. Prevention and management of target joints should be an important consideration of managing haemophilia patients.
  • Modelling low velocity impact induced damage in composite laminates

    Shi, Yu; Soutis, Constantinos; University of Chester; University of Manchester (SpringerOpen, 2017-07-26)
    The paper presents recent progress on modelling low velocity impact induced damage in fibre reinforced composite laminates. It is important to understand the mechanisms of barely visible impact damage (BVID) and how it affects structural performance. To reduce labour intensive testing, the development of finite element (FE) techniques for simulating impact damage becomes essential and recent effort by the composites research community is reviewed in this work. The FE predicted damage initiation and propagation can be validated by Non Destructive Techniques (NDT) that gives confidence to the developed numerical damage models. A reliable damage simulation can assist the design process to optimise laminate configurations, reduce weight and improve performance of components and structures used in aircraft construction.
  • Autologous chondrocyte implantation-derived synovial fluids display distinct responder and non-responder proteomic profiles

    Hulme, Charlotte; Wilson, Emma; Peffers, Mandy J.; Roberts, Sally; Simpson, Deborah M.; Richardson, James B.; Gallacher, Pete; Wright, Karina; Keele University; Robert Jones and Agnes Hunt Orthopaedic Hospital; University of Chester; University of Liverpool (BMC, 2017-06-30)
    Background Autologous chondrocyte implantation (ACI) can be used in the treatment of focal cartilage injuries to prevent the onset of osteoarthritis (OA). However, we are yet to understand fully why some individuals do not respond well to this intervention. Identification of a reliable and accurate biomarker panel that can predict which patients are likely to respond well to ACI is needed in order to assign the patient to the most appropriate therapy. This study aimed to compare the baseline and mid-treatment proteomic profiles of synovial fluids (SFs) obtained from responders and non-responders to ACI. Methods SFs were derived from 14 ACI responders (mean Lysholm improvement of 33 (17–54)) and 13 non-responders (mean Lysholm decrease of 14 (4–46)) at the two stages of surgery (cartilage harvest and chondrocyte implantation). Label-free proteome profiling of dynamically compressed SFs was used to identify predictive markers of ACI success or failure and to investigate the biological pathways involved in the clinical response to ACI. Results Only 1 protein displayed a ≥2.0-fold differential abundance in the preclinical SF of ACI responders versus non-responders. However, there is a marked difference between these two groups with regard to their proteome shift in response to cartilage harvest, with 24 and 92 proteins showing ≥2.0-fold differential abundance between Stages I and II in responders and non-responders, respectively. Proteomic data has been uploaded to ProteomeXchange (identifier: PXD005220). We have validated two biologically relevant protein changes associated with this response, demonstrating that matrix metalloproteinase 1 was prominently elevated and S100 calcium binding protein A13 was reduced in response to cartilage harvest in non-responders. Conclusions The differential proteomic response to cartilage harvest noted in responders versus non-responders is completely novel. Our analyses suggest several pathways which appear to be altered in non-responders that are worthy of further investigation to elucidate the mechanisms of ACI failure. These protein changes highlight many putative biomarkers that may have potential for prediction of ACI treatment success.
  • Transposing tirtha: Understanding religious reforms and locative piety in early modern Hinduism

    Thakkar, Chirayu; University of Chester (Springer, 2017-06-17)
    The paper deals with a historical and hitherto obscure case of de-commercialisation of sacred geography of India. Sahajanand Swami, an eighteenth century religious leader from Gujarat who became popular as Bhagwan Swaminarayan took an initiative to eliminate corruption in Dwarka, one of the most sacred destination in Hindu imagination. He also attempted to transpose the piety of Dwarka and recreate a parallel religious experience at Vadtal, an important site in Swaminarayan Hinduism. This process of making sacred sites more egalitarian is classified here as a 'religious reform'. The paper assesses this bivalent pursuit as an institutional reform within religion as well as a religious process in the context of piety, authority and orthodoxy. Through the example of Sahajanand Swami, it is argued to calibrate the colonial paradigm of reform that was largely contextual to social issues and western thought and failed to appreciate the religious reforms of that era. By constructing a nuanced typology of 'religious reform' distinct from 'social reforms', the paper eventually calls for a reassessment of religious figures who have significantly contributed in reforming the Hindu tradition in the medieval and modern era.
  • The cost of severe haemophilia in Europe: the CHESS study

    O’Hara, Jamie; Hughes, David; Camp, Charlotte; Burke, Tom; Carroll, Liz; Diego, Daniel-Anibal G.; University of Chester; HCD Economics, Daresbury; The Haeomophelia Society, London; FedHemo, Madrid (BMC, 2017-05-31)
    Background Severe haemophilia is associated with major psychological and economic burden for patients, caregivers, and the wider health care system. This burden has been quantified and documented for a number of European countries in recent years. However, few studies have taken a standardised methodology across multiple countries simultaneously, and sought to amalgamate all three levels of burden for severe disease. The overall aim of the ‘Cost of Haemophilia in Europe: a Socioeconomic Survey’ (CHESS) study was to capture the annualised economic and psychosocial burden of severe haemophilia in five European countries. A cross-section of haemophilia specialists (surveyed between January and April 2015) provided demographic and clinical information and 12-month ambulatory and secondary care activity for patients via an online survey. In turn, patients provided corresponding direct and indirect non-medical cost information, including work loss and out-of-pocket expenses, as well as information on quality of life and adherence. The direct and indirect costs for the patient sample were calculated and extrapolated to population level. Results Clinical reports for a total of 1,285 patients were received. Five hundred and fifty-two patients (43% of the sample) provided information on indirect costs and health-related quality of life via the PSC. The total annual cost of severe haemophilia across the five countries for 2014 was estimated at EUR 1.4 billion, or just under EUR 200,000 per patient. The highest per-patient costs were in Germany (mean EUR 319,024) and the lowest were in the United Kingdom (mean EUR 129,365), with a study average of EUR 199,541. As expected, consumption of clotting factor replacement therapy represented the vast majority of costs (up to 99%). Indirect costs are driven by patient and caregiver work loss. Conclusions The results of the CHESS study reflect previous research findings suggesting that costs of factor replacement therapy account for the vast majority of the cost burden in severe haemophilia. However, the importance of the indirect impact of haemophilia on the patient and family should not be overlooked. The CHESS study highlights the benefits of observational study methodologies in capturing a ‘snapshot’ of information for patients with rare diseases.

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