Barbara Falk, Sowjetische Städte in der Hungersnot 1932/33

The 1932/33 famine in the Soviet Union, which carried away the lives of an estimated six to eight million people, has always been studied primarily as a rural cataclysm, tragic consequence of the forced collectivisation of agriculture and the ensuing confrontation between the Bolshevik leadership and the peasantry. The general validity of this emphasis notwithstanding, the famine did, however, not remain exclusively confined to the rural areas. In Sowjetische Städte in der Hungersnot 1932/33 ..

The passport system and state control over population flows in the Soviet Union, 1932-1940.

RésuméLe système des passeports et le contrôle de l’État sur les déplacements de la population en URSS, 1932-1940.L’ouverture récente des archives a mis au jour un des aspects du contrôle policier soviétique, à savoir le système restrictif des passeports intérieurs et des permis de séjour urbains qui furent introduits en 1932. Notre article étudie les origines de ce système et suit son développement au cours des années 1930 jusqu’à la révision majeure des règlements en 1940. Le système des passeports servait à surveiller et à enregistrer les déplacements de la population vers des centres urbains et ruraux sélectionnés et hors de ces centres, et à débarrasser les centres les plus importants d’un point de vue stratégique des personnes considérées « peu fiables socialement ». Sa mise en œuvre entraîna au départ le « nettoyage social » et des expulsions massives des villes les plus grandes et des régions frontalières. Pendant les années qui suivirent, il servit de moyen de répression chaque fois qu’il fallait débarrasser une région d’« ennemis » ou de fauteurs de trouble potentiels et empêcher ce type d’individus de s’y installer. Les catégories de personnes soumises à ces restrictions changèrent avec le temps en fonction des besoins sécuritaires du régime. Le nombre de régions auxquelles ces restrictions s’appliquaient augmenta considérablement au cours des années 1930. Bien que le système des passeports eût réalisé ses objectifs d’un point de vue répressif, il eut plus de difficultés à mettre en œuvre les formes de contrôle des mouvements de population plus systématiques qui avaient été envisagées au départ. En ceci, c’était un instrument de contrôle stalinien typique -- rudimentaire et sélectif, mais catégorique.AbstractOne of the aspects of police control in the Soviet Union that the recent opening-up of the archives has shed new light on is the restrictive system of internal passports and urban residence permits that was introduced in 1932. The article examines the origins of this system and traces its subsequent development during the 1930s, up until a major overhaul of the regulations in force in September 1940. The passport system served as an instrument for monitoring, counting and registering population flows in and out of urban and selected non-urban areas, and for keeping the strategically more important of these areas free of persons that were held to be “socially undesirable”. Its initial implementation involved the “social cleansing” of the larger towns and the border-zone and large-scale expulsions from these areas. In subsequent years it served as a lever of control that was put in place whenever it was found expedient to rid one area or another of potential “enemies” or troublemakers, and to prevent people that could become so from settling there. The categories of people that were subject to settlement restrictions changed over time, depending on the regime’s security concerns. The number of areas where settlement restrictions were in force increased significantly in the course of the 1930s. Whilst effective in achieving its repressive aims, the passport system faced much larger difficulties in implementing the more systematic forms of control over population movements that had been envisaged at the outset. This made it the typical Stalinist instrument of control -- crude and selective, but decisive

Investigating the effectiveness and cost-effectiveness of FITNET-NHS (Fatigue In Teenagers on the interNET in the NHS) compared to activity management to treat paediatric chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME):amendment to the published protocol

The FITNET-NHS Trial is a UK, national, trial investigating whether an online cognitive behavioural therapy program (FITNET-NHS) for treating chronic fatigue syndrome/ME in adolescents is clinically effective and cost-effective in the NHS. At the time of writing (September 2019), the trial was recruiting participants. This article presents an update to the planned sample size and data collection duration previously published within the trial protocol. Trial registration: ISRCTN, ID: 18020851. Registered 8 April 2016

Recruiting adolescents with CFS/ME to Internet-delivered therapy:Internal pilot within a randomised controlled trial

Background: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adolescents is common and disabling. Teenagers in the United Kingdom are more likely to recover if they access specialist care, but most do not have access to a local specialist CFS/ME service. Delivering treatment remotely via the internet could improve access to treatment. Objective: This study aims to assess (1) the feasibility of recruitment and retention into a trial of internet-delivered specialist treatment for adolescents with CFS/ME and (2) the acceptability of trial processes and 2 web-based treatments (to inform continuation to full trial). Methods: This study is an internal pilot for the initial 12 months of a full randomized controlled trial (RCT), with integrated qualitative methods (analysis of recruitment consultations and participant and clinician interviews). Recruitment and treatment were delivered remotely from a specialist pediatric CFS/ME treatment service within a hospital in South West United Kingdom. Adolescents (aged 11-17 years) from across the United Kingdom with a diagnosis of CFS/ME and no access to local specialist treatment were referred by their general practitioner to the treatment center. Eligibility assessment and recruitment were conducted via remote methods (telephone and on the web), and participants were randomized (via a computer-automated system) to 1 of 2 web-based treatments. The trial intervention was Fatigue in Teenagers on the InterNET in the National Health Service, a web-based modular CFS/ME-specific cognitive behavioral therapy program (designed to be used by young people and their parents or caregivers) supported by individualized clinical psychologist electronic consultations (regular, scheduled therapeutic message exchanges between participants and therapist within the platform). The comparator was Skype-delivered activity management with a CFS/ME clinician (mainly a physiotherapist or occupational therapist). Both treatments were intended to last for up to 6 months. The primary outcomes were (1) the number of participants recruited (per out-of-area referrals received between November 1, 2016, to October 31, 2017) and the proportion providing 6-month outcome data (web-based self-report questionnaire assessing functioning) and (2) the qualitative outcomes indicating the acceptability of trial processes and treatments. Results: A total of 89 out of 150 (59.3% of potentially eligible referrals) young people and their parents or caregivers were recruited, with 75 out of 89 (84.2%) providing 6-month outcome data. Overall, web-based treatment was acceptable; however, participants and clinicians described both the advantages and disadvantages of remote methods. No serious adverse events were reported. Conclusions: Recruiting young people (and their parents or caregivers) into an RCT of web-based treatment via remote methods is feasible and acceptable. Delivering specialist treatment at home via the internet is feasible and acceptable, although some families prefer to travel across the United Kingdom for face-to-face treatment

Investigating the effectiveness and cost-effectiveness of FITNET-NHS (Fatigue In Teenagers on the interNET in the NHS) compared to Activity Management to treat paediatric chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME):protocol for a randomised controlled trial

Background: Paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is a relatively common and disabling condition. The National Institute for Health and Clinical Excellence (NICE) recommends Cognitive Behavioural Therapy (CBT) as a treatment option for paediatric CFS/ME because there is good evidence that it is effective. Despite this, most young people in the UK are unable to access local specialist CBT for CFS/ME. A randomised controlled trial (RCT) showed FITNET was effective in the Netherlands but we do not know if it is effective in the National Health Service (NHS) or if it is cost-effective. This trial will investigate whether FITNET-NHS is clinically effective and cost-effective in the NHS. Methods: Seven hundred and thirty-four paediatric patients (aged 11-17 years) with CFS/ ME will be randomised (1:1) to receive either FITNET-NHS (online CBT) or Activity Management (delivered via video call). The internal pilot study will use integrated qualitative methods to examine the feasibility of recruitment and the acceptability of treatment. The full trial will assess whether FITNET-NHS is clinically effective and cost-effective. The primary outcome is disability at 6 months, measured using the SF-36-PFS (Physical Function Scale) questionnaire. Cost-effectiveness is measured via cost-utility analysis from an NHS perspective. Secondary subgroup analysis will investigate the effectiveness of FITNET-NHS in those with co-morbid mood disorders. Discussion: If FITNET-NHS is found to be feasible and acceptable (internal pilot) and effective and cost-effective (full trial), its provision by the NHS has the potential to deliver substantial health gains for the large number of young people suffering from CFS/ME but unable to access treatment because there is no local specialist service. This trial will provide further evidence evaluating the delivery of online CBT to young people with chronic conditions

Twist exome capture allows for lower average sequence coverage in clinical exome sequencing

Background Exome and genome sequencing are the predominant techniques in the diagnosis and research of genetic disorders. Sufficient, uniform and reproducible/consistent sequence coverage is a main determinant for the sensitivity to detect single-nucleotide (SNVs) and copy number variants (CNVs). Here we compared the ability to obtain comprehensive exome coverage for recent exome capture kits and genome sequencing techniques. Results We compared three different widely used enrichment kits (Agilent SureSelect Human All Exon V5, Agilent SureSelect Human All Exon V7 and Twist Bioscience) as well as short-read and long-read WGS. We show that the Twist exome capture significantly improves complete coverage and coverage uniformity across coding regions compared to other exome capture kits. Twist performance is comparable to that of both short- and long-read whole genome sequencing. Additionally, we show that even at a reduced average coverage of 70× there is only minimal loss in sensitivity for SNV and CNV detection. Conclusion We conclude that exome sequencing with Twist represents a significant improvement and could be performed at lower sequence coverage compared to other exome capture techniques

A Solve-RD ClinVar-based reanalysis of 1522 index cases from ERN-ITHACA reveals common pitfalls and misinterpretations in exome sequencing

Purpose Within the Solve-RD project (https://solve-rd.eu/), the European Reference Network for Intellectual disability, TeleHealth, Autism and Congenital Anomalies aimed to investigate whether a reanalysis of exomes from unsolved cases based on ClinVar annotations could establish additional diagnoses. We present the results of the “ClinVar low-hanging fruit” reanalysis, reasons for the failure of previous analyses, and lessons learned. Methods Data from the first 3576 exomes (1522 probands and 2054 relatives) collected from European Reference Network for Intellectual disability, TeleHealth, Autism and Congenital Anomalies was reanalyzed by the Solve-RD consortium by evaluating for the presence of single-nucleotide variant, and small insertions and deletions already reported as (likely) pathogenic in ClinVar. Variants were filtered according to frequency, genotype, and mode of inheritance and reinterpreted. Results We identified causal variants in 59 cases (3.9%), 50 of them also raised by other approaches and 9 leading to new diagnoses, highlighting interpretation challenges: variants in genes not known to be involved in human disease at the time of the first analysis, misleading genotypes, or variants undetected by local pipelines (variants in off-target regions, low quality filters, low allelic balance, or high frequency). Conclusion The “ClinVar low-hanging fruit” analysis represents an effective, fast, and easy approach to recover causal variants from exome sequencing data, herewith contributing to the reduction of the diagnostic deadlock