The EURO-NMD Registry collects data from all neuromuscular patients seen at EURO-NMD's expert centres. In-kind contributions from three patient organisations have ensured that the registry is ...patient-centred, meaningful, and impactful. The consenting process covers other uses, such as research, cohort finding and trial readiness.
The registry has three-layered datasets, with European Commission-mandated data elements (EU-CDEs), a set of cross-neuromuscular data elements (NMD-CDEs) and a dataset of disease-specific data elements that function modularly (DS-DEs). The registry captures clinical, neuromuscular imaging, neuromuscular histopathology, biological and genetic data and patient-reported outcomes in a computer-interpretable format using selected ontologies and classifications. The EURO-NMD registry is connected to the EURO-NMD Registry Hub through an interoperability layer. The Hub provides an entry point to other neuromuscular registries that follow the FAIR data stewardship principles and enable GDPR-compliant information exchange. Four national or disease-specific patient registries are interoperable with the EURO-NMD Registry, allowing for federated analysis across these different resources.
Collectively, the Registry Hub brings together data that are currently siloed and fragmented to improve healthcare and advance research for neuromuscular diseases.
In March 2020, coronavirus disease 2019 (COVID‐19) spread rapidly nationally, causing widespread emergent changes to the health system. Our goal was to understand the impact of the epidemic on kidney ...transplantation (KT), at both the national and center levels, accounting statistically for waitlist composition. Using Scientific Registry of Transplant Recipients data, we compared data on observed waitlist registrations, waitlist mortality, and living‐donor and deceased‐donor kidney transplants (LDKT/DDKT) March 15‐April 30, 2020 to expected events calculated from preepidemic data January 2016‐February 2020. There were few changes before March 15, at which point the number of new listings/DDKT/LDKT dropped to 18%/24%/87% below the expected value (all P < .001). Only 12 centers performed LDKT March 15‐31; by April 30, 40 centers had resumed LDKT. The decline in new listings and DDKT was greater among states with higher per capita confirmed COVID‐19 cases. The number of waitlist deaths was 2.2‐fold higher than expected in the 5 states with highest COVID‐19 burden (P < .001). DCD DDKT and regional/national imports declined nationwide but most steeply in states with the highest COVID‐19 burden. The COVID‐19 epidemic has resulted in substantial changes to KT; we must adapt and learn rapidly to continue to provide safe access to transplantation and limit the growing indirect toll of an already deadly disease.
The authors present national‐ and center‐level data on reduced kidney transplant activity early in the COVID‐19 pandemic and link findings to state‐level COVID‐19 burden.
Limited population‐based cancer registry data available in China until now has hampered efforts to inform cancer control policy. Following extensive efforts to improve the systematic cancer ...surveillance in this country, we report on the largest pooled analysis of cancer survival data in China to date. Of 21 population‐based cancer registries, data from 17 registries (n = 138,852 cancer records) were included in the final analysis. Cases were diagnosed in 2003–2005 and followed until the end of 2010. Age‐standardized relative survival was calculated using region‐specific life tables for all cancers combined and 26 individual cancers. Estimates were further stratified by sex and geographical area. The age‐standardized 5‐year relative survival for all cancers was 30.9% (95% confidence intervals: 30.6%‐31.2%). Female breast cancer had high survival (73.0%) followed by cancers of the colorectum (47.2%), stomach (27.4%), esophagus (20.9%), with lung and liver cancer having poor survival (16.1% and 10.1%), respectively. Survival for women was generally higher than for men. Survival for rural patients was about half that of their urban counterparts for all cancers combined (21.8% vs. 39.5%); the pattern was similar for individual major cancers except esophageal cancer. The poor population survival rates in China emphasize the urgent need for government policy changes and investment to improve health services. While the causes for the striking urban‐rural disparities observed are not fully understood, increasing access of health service in rural areas and providing basic health‐care to the disadvantaged populations will be essential for reducing this disparity in the future.
What's new?
Because it's difficult to create good public‐health policies without good population data, China has recently made efforts to improve its systematic recording of cancer data. This paper reports the largest pooled analysis of survival data in China, the first to include data from a wide range of geographical areas. They report the various survival rates for different cancers by age, gender, and locality. The most striking finding was that those living in rural residents had far lower survival rates than urban residents. This finding may prompt efforts to improve availability of cancer prevention and treatment in rural areas of China.
•Hexyl 2-methylbutyrate; a safety assessment based on RIFM's criteria.•A safety assessment based on 7 human health endpoints plus environmental.•All endpoints were cleared using target data, ...read-across, and/or TTC.
The National Breast Cancer Register (NBCR) of Sweden was launched in 2008 and is used for quality assurance, benchmarking, and research. Its three reporting forms encompass Notification, Adjuvant ...therapy and Follow-up. Target levels are set by national and international guidelines. This national validation assessed data quality of the register.
Data recorded through the Notification form were evaluated for completeness, timeliness, comparability and validity. Completeness was assessed by cross-linkage to the Swedish Cancer Register (SCR). Comparability was analyzed by comparing registration routines in NBCR with national and international guidelines. Timeliness was defined as the difference between the earliest date of diagnosis and the reporting date to NBCR. Validity was assessed by re-abstraction of medical chart data for 800 randomly selected patients diagnosed in 2013.
The completeness of the NBCR was high with a coverage across regions and years (2010-2014) of 99.9%. Of all incident cases reported to the NBCR in 2013 (N = 8654), 98.5% were included within 12 months and differences between health regions were essentially negligible. Coding procedures followed guidelines and were uniformly adhered to. The proportion of missing values was < 5% for most variables and reported information generally had high exact agreement (> 90%).
Completeness of data, comparability and agreement in the NBCR was high. For clinical quality purposes and benchmarking, improved timeliness is warranted. Assessment of validity has resulted in a thorough review of all variables included in the Notification form with clarifications and revision of selected variables.
Rare diseases (RD) patient registries are powerful instruments that help develop clinical research, facilitate the planning of appropriate clinical trials, improve patient care, and support ...healthcare management. They constitute a key information system that supports the activities of European Reference Networks (ERNs) on rare diseases. A rapid proliferation of RD registries has occurred during the last years and there is a need to develop guidance for the minimum requirements, recommendations and standards necessary to maintain a high-quality registry. In response to these heterogeneities, in the framework of RD-Connect, a European platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research, we report on a list of recommendations, developed by a group of experts, including members of patient organizations, to be used as a framework for improving the quality of RD registries. This list includes aspects of governance, Findable, Accessible, Interoperable and Reusable (FAIR) data and information, infrastructure, documentation, training, and quality audit. The list is intended to be used by established as well as new RD registries. Further work includes the development of a toolkit to enable continuous assessment and improvement of their organizational and data quality.
Colorectal cancer screening programmes and uptake vary substantially across Europe. We aimed to compare changes over time in colorectal cancer incidence, mortality, and stage distribution in relation ...to colorectal cancer screening implementation in European countries.
Data from nearly 3·1 million patients with colorectal cancer diagnosed from 2000 onwards (up to 2016 for most countries) were obtained from 21 European countries, and were used to analyse changes over time in age-standardised colorectal cancer incidence and stage distribution. The WHO mortality database was used to analyse changes over time in age-standardised colorectal cancer mortality over the same period for the 16 countries with nationwide data. Incidence rates were calculated for all sites of the colon and rectum combined, as well as the subsites proximal colon, distal colon, and rectum. Average annual percentage changes (AAPCs) in incidence and mortality were estimated and relevant patterns were descriptively analysed.
In countries with long-standing programmes of screening colonoscopy and faecal tests (ie, Austria, the Czech Republic, and Germany), colorectal cancer incidence decreased substantially over time, with AAPCs ranging from −2·5% (95% CI −2·8 to −2·2) to −1·6% (−2·0 to −1·2) in men and from −2·4% (−2·7 to −2·1) to −1·3% (−1·7 to −0·9) in women. In countries where screening programmes were implemented during the study period, age-standardised colorectal cancer incidence either remained stable or increased up to the year screening was implemented. AAPCs for these countries ranged from −0·2% (95% CI −1·4 to 1·0) to 1·5% (1·1 to 1·8) in men and from −0·5% (−1·7 to 0·6) to 1·2% (0·8 to 1·5) in women. Where high screening coverage and uptake were rapidly achieved (ie, Denmark, the Netherlands, and Slovenia), age-standardised incidence rates initially increased but then subsequently decreased. Conversely, colorectal cancer incidence increased in most countries where no large-scale screening programmes were available (eg, Bulgaria, Estonia, Norway, and Ukraine), with AAPCs ranging from 0·3% (95% CI 0·1 to 0·5) to 1·9% (1·2 to 2·6) in men and from 0·6% (0·4 to 0·8) to 1·1% (0·8 to 1·4) in women. The largest decreases in colorectal cancer mortality were seen in countries with long-standing screening programmes.
We observed divergent trends in colorectal cancer incidence, mortality, and stage distribution across European countries, which appear to be largely explained by different levels of colorectal cancer screening implementation.
German Cancer Aid (Deutsche Krebshilfe) and the German Federal Ministry of Education and Research.
Background:
Orthopaedic registries have shown value in tracking and surveillance of patients, implants, and outcomes associated with procedures. No current anterior cruciate ligament reconstruction ...registry (ACLRR) exists in the United States.
Purpose:
To describe the current cohort captured by an institutional ACLRR and describe the outcomes observed in the registered patients and how findings from the ACLRR are disseminated.
Study Design:
Cohort study; Level of evidence, 2.
Methods:
The anterior cruciate ligament reconstructions (ACLRs) registered between February 2005 and September 2011 by 244 surgeons in 48 medical centers were evaluated. The ACLRR collected data intra- and postoperatively using paper forms and electronic medical records. The ACLRR cohort was longitudinally followed and outcomes were prospectively ascertained. Outcomes (ie, revisions, subsequent operations, venous thromboembolism, and surgical site infections) were adjudicated via chart review. Descriptive statistics are used to describe the cohort and Kaplan-Meier curves to evaluate survival.
Results:
During the study period, 16,192 ACLRs (15,101 primary and 1091 revisions) with a median follow-up of 1.6 years (interquartile range, 0.7-2.8 years) were registered. Male patients received 64% of both primary and revision ACLRs. The mean age at surgery was 29.5 years (SD, 11.4 years) for primary and revision reconstructions. Cartilage injuries were noted in 25.2% of primary and 37.5% of revision ACLRs, and meniscal injuries were identified in 60.8% and 53.2%, respectively. Autografts were used in 57.6% of primary ACLRs and 20.9% of revisions. Allografts were used in 42.4% of primaries and 78.8% of revisions. In primary ACLR, the most common femoral and tibial fixation types were interference screws (42.2% and 79.7%, respectively). Fixation type distribution was nearly identical in primaries and revisions. Of the primary ACLRs, 3.7% had subsequent operations on the same knee and 1.7% on the contralateral knee. Deep surgical site infection developed in 0.3% of primaries and 0.8% of revisions. Symptomatic deep vein thromboses were seen in 0.2% of both primaries and revisions. The overall revision rate was 1.7%. Lower rates of graft survival were identified in younger patients and those with allografts.
Conclusion:
Large, community-based ACLRRs are useful in informing participating surgeons of current treatment practices, prevalence of concurrent injuries, and outcomes associated with the procedures. Information from the ACLRR can be used to develop interactive patient and surgeon tools that can be used to optimize patient care.
Coronavirus disease 2019 (COVID-19) has associated cutaneous manifestations.
To characterize the diversity of cutaneous manifestations of COVID-19 and facilitate understanding of the underlying ...pathophysiology.
Case series from an international registry from the American Academy of Dermatology and International League of Dermatological Societies.
The registry collected 716 cases of new-onset dermatologic symptoms in patients with confirmed/suspected COVID-19. Of the 171 patients in the registry with laboratory-confirmed COVID-19, the most common morphologies were morbilliform (22%), pernio-like (18%), urticarial (16%), macular erythema (13%), vesicular (11%), papulosquamous (9.9%), and retiform purpura (6.4%). Pernio-like lesions were common in patients with mild disease, whereas retiform purpura presented exclusively in ill, hospitalized patients.
We cannot estimate incidence or prevalence. Confirmation bias is possible.
This study highlights the array of cutaneous manifestations associated with COVID-19. Many morphologies were nonspecific, whereas others may provide insight into potential immune or inflammatory pathways in COVID-19 pathophysiology.
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