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Genotypic definition of monogenic inborn errors of immunity (IEIs) continues to accelerate with broader access to next generation sequencing, underscoring this aggregated group of disorders as a major health burden impacting both civilian and military populations. At an estimated prevalence of 1 in 1200 individuals, IEIs affect ~8,000 patients within the Military Health System (MHS). Despite access to targeted gene/exome panels at military treatment facilities, most affected patients never receive a definitive genetic diagnosis that would significantly improve clinical care. To address this gap, we established the first registry of IEI patients within the MHS with the goal of identifying known and novel pathogenic genetic defects to increase diagnosis rates and enhance clinical care. Using the registry, a research protocol was opened in July 2022. Since July we have enrolled 75 IEI patients encompassing a breadth of phenotypes including severe and recurrent infections, bone marrow failure, autoimmunity/autoinflammation, atopic disease, and malignancy. Enrolled patients provide blood and bone marrow samples for whole genome, ultra-deep targeted panel and comprehensive transcriptome sequencing, plus cryopreservation of peripheral blood mononuclear cells for future functional studies. We are also implementing and developing analytical methods for identifying and interrogating non-coding and structural variants. Suspected pathogenic variants are adjudicated by a clinical molecular geneticist using state-of-the-art analysis pipelines. These analyses subsequently inform in vitro experiments to validate causative mutations using cell reporter systems and primary patient cells. Clinical variant validation and return of genetic results are planned with genetic counseling provided. As a proof of principle, this integrated genetic evaluation pipeline revealed a novel, candidate TLR7 nonsense variant in two adolescent brothers who both endured critical COVID-19 pneumonia, requiring mechanical ventilation and extracorporeal membrane oxygenation. Our protocol is therefore poised to greatly enrich clinical genetics resources available in the MHS for IEI patients, contributing to better diagnosis rates, informed family counseling, and targeted treatments that collectively improve the health and readiness of the military community. Moreover, our efforts should yield new mechanistic insights on immune pathogenesis for a broad variety of known and novel IEIs.Copyright © 2023 Elsevier Inc.
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The Spanish Society of Cardiovascular & Endovascular Surgery presents the 2012-2021 report of the activity in congenital cardiovascular surgery, based on a voluntary and anonymous registration involving most of Spanish centres. This article is complementary to the 2021 cardiovascular surgery annual report, and they are published together. In 2021, still marked by the aftermath of the COVID-19 pandemic, the decline in our 2020 congenital activity persists, compared with previous years. We included data from the previous 10 years, in order to obtain real information related to our activity with these relatively scarce pathologies. In the last decade, a total of 20,139 congenital heart surgeries were performed, accounting for 9.5% of all major surgery (congenital + acquired) performed in Spain during that period. Of these surgeries, 81.5% of them required extracorporeal circulation and 18.5% not. We highlight the interventions in neonates and adult patients, which mean respectively 18% and 21% of our whole activity and are a real challenge. The most prevalent congenital heart pathologies operated on were: septal defects in cases requiring extracorporeal circulation, and ductus in patients without extracorporeal circulation. The presented data are adjusted to the basic Aristotle score of preoperative surgical risk. The observed mortality of surgeries with extracorporeal circulation was 3.07% (Aristotle: 6.29), and without cardiopulmonary bypass 2.25% (Aristotle: 4.82). Our national registry of surgical activity in congenital heart disease shows good results, allows us to compare ourselves within a national and international framework, design improvement strategies, set objectives and improve the quality of our actions.Copyright © 2023 Sociedad Espanola de Cirugia Cardiovascular y Endovascular
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Introduction: Croatian National Cancer Registry of Croatian Institute for Public Health reported that in year 2020 lung cancer was the second most common cancer site diagnosed in men with 16% and the third most common in women with 10% incidence among all cancer sites. Unfortunatelly lung cancer has the highest mortality in both men and women. Haematological malignancies had 7% share in all malignancies in both male and female cances cases. In 2020 190 newly diagnosed cases of lymphatic leukemia in men and 128 cases in women were reporeted, meaning 1.5 and 1.2% of all malignancies, respectively. Chronic lymphatic leukemia (CLL) is an advanced age disease and incidence increases with age. Impaired immunity, T and B cell dysfunction in CLL, chromosomal aberations, long-term immunosuppressive therapy and genetic factors can all cause secondary malignancies. Co- occurence of solid tumors and CLL is very rare. Although patiens with CLL have an increased risk of developing second primary malignancies including lung carcinoma, the data about their clinical outcomes are lacking. Parekh et al. retrospectively analyzed patients with simultaneous CLL and lung carcinoma over a 20-year period, and they found that ~2% of patients with CLL actually developed lung carcinoma. The authors claimed that up to 38% of patients will also develop a third neoplasm more likely of the skin (melanoma and basal cell carcinoma), larynx (laryngeal carcinoma) or colon. Currently there are no specific guidelines for concurrent CLL and non-small cell lung carcinoma (NSCLC) treatment. Usually, when the tumors are diagnosed simultaneously, treatment is based to target the most aggressive malignancy, as the clinical outcomes depend on the response of the tumor with the poorest prognosis. For this reason, a multidisciplinary approach is mandatory. Case report: A patient with history of coronary heart disease, myocardial infarction and paroxysmal atrial fibrillation was diagnosed in 2019 (at the age of 71) with B chronic lymphocytic leukemia with bulky tumor (inguinal lymph nodes 8x5 cm), stage B according to Binet, intermediate risk. He was treated with 6 cycles of chemoimmunotherapy (rituximab/cyclofosfamid/fludarabine). In 10/2019 remission was confirmed, but MSCT described tumor in the posterior segment of upper right lung lobe measuring 20x17 mm and bilateral metastases up to 11 mm. Bronchoscopy and biopsy were performed, and EGFR neg, ALK neg, ROS 1 neg, PD-L1>50% adenocarcinoma was confirmed. He was referred to Clinical Hospital Center Osijek where monotherapy with pembrolizumab in a standard dose of 200 mg intravenously was started in 01/2020. Partial remission was confirmed in October 2020. Immunotherapy was discontinued due to development of pneumonitis, dysphagia and severe weight loss (20kg), but without radiologically confirmed disease progression. At that time he was referred to our hospital for further treatment. Gastroscopy has shown erosive gastritis with active duodenal ulcus, Forrest III. Supportive therapy and proton pump inhibitor were introduced. After complete regression of pneumonitis, improvement of general condition and resolution of dysphagia, no signs of lung cancer progression were found and pembrolizumab was reintroduced in 12/2021. Hypothyroidism was diagnosed in 01/2021 and levothyroxine replacement ther apy was started. In 03/2021 he underwent surgical removal of basal cell carcinoma of skin on the right temporal region with lobe reconstruction. From 02/2021, when pembrolizumab was reintroduced, regression in tumor size was continously confirmed with complete recovery of general condition. He was hospitalized for COVID 19 infection in 09/2021, and due to complications pembrolizumab was discontinued till 11/2021. Lung cancer immunotherapy proceeded till 11/2022, when Multidisciplinary team decided to finish pembrolizumab because of CLL relapse. CLL was in remission till August 2022 when due to B symptoms, lymphcytosis, anemia and generalized lymphadenopathy, hematological workup including biopsy of cervical lymph node was performed and CLL/SLL relapse was confirmed. Initially chlorambucil was introduced, but disease was refractory. Based on cytogenetic test results (IGHV unmutated, negative TP53) and due to cardiovascular comorbidity (contraindication for BTK inhibitors) venetoclax and rituximab were started in 01/2023. After just 1 cycle of treatment normal blood count as well as regression of B symptoms and peripheral lymphadenopathy occured, indicating the probability of complete disease remission. In our patient with metastatic lung adenocarcinoma excellent disease control is achieved during 41 month of treatment in first line setting. Furthermore, relapsed/refractory CLL/SLL is currently in confirmed remission. Conclusion(s): Successful treatment of patients with multiple primary malignancies is based on multidisciplinarity, early recognition and management of side effects, treatment of comorbidities with the aim of prolonging life, controlling symptoms of disease and preserving quality of life.
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Background: Coronavirus Disease 2019 (COVID-19) is a highly contagious disease that resulted in 4533645 deaths until September first, 2021. Multiple Sclerosis (MS) patients receive immunosuppressive drugs. Thus, there is a concern that these drugs will reduce the patient's immune system resistance against COVID19. Objective(s): This study aimed to evaluate the epidemiology of COVID19 and its impact on MS patients in our university hospital in Tehran City, Iran. Material(s) and Method(s): A cross-sectional study was conducted based on hospital-based registry data from May 2020 to March 2021. Among more than 500 registered MS patients in Imam Khomeini Hospital in Tehran City, Iran, referring within our study period, 84 patients reported SARS-COV2 infection. The diagnosis of MS was confirmed by the McDonald criteria. Moreover, the diagnosis of COVID-19 in MS patients was established by the real-time-PCR technique and chest computed tomography. Result(s): Out of 84 MS patients with SARS-COV2 infection, 55(65.5%) were women, and their mean age was 37.48 years. The most commonly used medications by MS patients were Rituximab 20 (26.3%) and Dimethyl Fumarate 14(18.4%). Totally, 9(10.8%) of the patients needed to be hospitalized due to COVID-19, with a mean hospitalization duration of 5.88 days. A total of 1 (1.2%) death was reported. Conclusion(s): Compared to the healthy population, COVID-19 is not more serious in MS patients. Most MS patients with COVID-19 infection were not hospitalized and continued their medication during the infection.Copyright © 2022 The Authors. This is an open access article under the CC-By-NC license. All Rights Reserved.
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Introduction: Pediatric brain tumors are the most common tumor in children after hematological malignancies. There is very few data about the epidemiology of pediatric brain tumors in India. Methods - This was a prospective and retrospective study in pediatric patients who had undergone surgery in our institute (JIPMER,Pondicherry). 80 cases were recruited and followed up for minimum follow up period of 1 year. The demographic profile was analysed and IHC markers were done for embroyonal tumors and glioma. Result(s): Pediatric brain tumors was equally distributed among male and females. (1:1) .Mean age of presentation was 10 years . 27.5 % of our cases were embryonal tumors,low grade glioma (16.25 % ) ,high grade glioma ( 12.5 % ) ,ependymoma and craniopharyngioma comprised 15 % of our cases each. Medulloblastoma comprised 23.75 % of cases Out of which 31.5 % had craniospinal metastasis at time of diagnosis. The most common location of SHH pathway medulloblastoma was cerebellar hemisphere and non WNT/non SHH was fourth ventricle. 45.45 % of patients with high grade glioma had recurrence .50 % of ependymoma cases were infratentorial. we had 2 cases of ganglioglioma ,one in the midbrain and other in temporal lobe .Gross total resection was achieved in 30 % ,Subtotal resection in 46.25 % and partial resection in 20 % of our cases. Outcome of patients at the end of 1 year for low and high grade glioma, ependymoma and craniopharyngioma were similar to western literature. Two patients acquired COVID 19 and died while undergoing treatment. Molecular markers like INI1, LIN28 A was highly sensitive and specific for diagnosing atypical teratoid rhabdoid tumor (ATRT) and embryonal tumor with multilayered rosettes (ETMR )respectively. Conclusion(s): Our study emphasizes the need of standardized and systemic cancer registries in India. (Figure Presented).
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OBJECTIVES: To provide an overview of the spectrum, characteristics and outcomes of neurologic manifestations associated with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection. METHODS: We conducted a single-centre retrospective study during the French coronavirus disease 2019 (COVID-19) epidemic in March-April 2020. All COVID-19 patients with de novo neurologic manifestations were eligible. RESULTS: We included 222 COVID-19 patients with neurologic manifestations from 46 centres in France. Median (interquartile range, IQR) age was 65 (53-72) years and 136 patients (61.3%) were male. COVID-19 was severe or critical in 102 patients (45.2%). The most common neurologic diseases were COVID-19-associated encephalopathy (67/222, 30.2%), acute ischaemic cerebrovascular syndrome (57/222, 25.7%), encephalitis (21/222, 9.5%) and Guillain-Barré syndrome (15/222, 6.8%). Neurologic manifestations appeared after the first COVID-19 symptoms with a median (IQR) delay of 6 (3-8) days in COVID-19-associated encephalopathy, 7 (5-10) days in encephalitis, 12 (7-18) days in acute ischaemic cerebrovascular syndrome and 18 (15-28) days in Guillain-Barré syndrome. Brain imaging was performed in 192 patients (86.5%), including 157 magnetic resonance imaging (70.7%). Among patients with acute ischaemic cerebrovascular syndrome, 13 (22.8%) of 57 had multiterritory ischaemic strokes, with large vessel thrombosis in 16 (28.1%) of 57. Brain magnetic resonance imaging of encephalitis patients showed heterogeneous acute nonvascular lesions in 14 (66.7%) of 21. Cerebrospinal fluid of 97 patients (43.7%) was analysed, with pleocytosis found in 18 patients (18.6%) and a positive SARS-CoV-2 PCR result in two patients with encephalitis. The median (IQR) follow-up was 24 (17-34) days with a high short-term mortality rate (28/222, 12.6%). CONCLUSIONS: Clinical spectrum and outcomes of neurologic manifestations associated with SARS-CoV-2 infection were broad and heterogeneous, suggesting different underlying pathogenic processes.
Subject(s)
COVID-19/complications , Nervous System Diseases/etiology , Registries/statistics & numerical data , Aged , Brain/diagnostic imaging , Brain/pathology , COVID-19/epidemiology , Female , France/epidemiology , Humans , Male , Middle Aged , Nervous System Diseases/diagnosis , Nervous System Diseases/epidemiology , Nervous System Diseases/pathology , Retrospective Studies , SARS-CoV-2ABSTRACT
Background: As the February 2022 Surveillance, Epidemiology, and End Results (SEER) Call for Data deadlines approached, the New York State Cancer Registry had received reports for approximately 10% fewer consolidated incident cases for 2020 than expected. We used claims data to examine changes in the volume of cancer claim records during the COVID-19 pandemic and possible contributors to the deficit in cancer reports. Methods: The New York State (NYS) Statewide Planning and Research Cooperative System (SPARCS) requires reporting of all patient encounters from licensed ambulatory surgery, emergency department, and hospital inpatient and outpatient providers. Each record includes patient demographics and up to 17 diagnosis codes from the International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM). For this project, we extracted 6,725,416 SPARCS records with any malignant neoplasm code for 2018 through June 2021 for NYS residents. Using SAS 9.4, we focused on comparing the cancer-related records for 2020 to the records from 2019. Results: Overall, there were 5% more cancer-related records in 2019 than in 2018 (2,009,600 vs 1,914,364), but 8.2% fewer records in 2020 (1,844,054 total) than in 2019. Looking by month and year, the number of claims in the first 2 months of 2020 exceeded the numbers from 2019 by 5%. However, a decrease in the number of claims started in March 2020, with the biggest drop in April 2020, where there was a deficit of 38.8% for cancer-related encounter reports relative to the same month the previous year. Although the numbers rose after April, the number of claims for the last half of 2020 was still 4% lower than the same time frame in 2019. There were substantial decreases in the number of records in 2020 for all encounter types and across levels of each covariate examined, including age, sex, race/ethnicity, and facility region of NYS. In analyses of all reporting facilities, facilities in New York City had a more pronounced and more prolonged drop in reporting in 2020 than facilities in the rest of the state. Conclusion: Although SPARCS data do not provide definitive evidence of decreases in incident cancer diagnoses, these data suggest that there were fewer cancers diagnosed among NYS residents in 2020. Additional analyses are needed to assess the impacts of COVID-19-related delays in cancer diagnosis and treatment on stage at diagnosis and outcomes.
Subject(s)
COVID-19 , Neoplasms , Humans , COVID-19/epidemiology , Neoplasms/epidemiology , New York/epidemiology , New York City , Pandemics , Registries , Case Reports as TopicABSTRACT
ObjectivesãTo show the impact of COVID-19 on cancer treatment in Tochigi prefecture.MethodsãThe number of cancer cases registered in Tochigi prefecture before (2019) and after (2020) COVID-19 was compared using cancer registry data from 18 member hospitals of the Tochigi Prefecture Cancer Care Collaboration Council. Data were compared by sex, age, patient's address at the time of diagnosis, month of diagnosis, cancer site, cancer stage, and treatment. Data on screenings for stomach, colorectum, lung, female breast, cervix, and prostate cancers were investigated in detail.ResultsãThe total number of registered cancer cases was 19,748 in 2019 and 18,912 in 2020 (a decrease of 836 cases [-4.2%]). Among the total cases, there were 11,223 and 10,511 males in 2019 and 2020, respectively (a decrease of 712 cases [-6.3%]) and 8,525 and 8,401 females in 2019 and 2020, respectively (a decrease of 124 cases [-1.5%]). The decrease was greater among males than among females. There was no decrease in the number of registered patients aged <40 years between 2019 and 2020. Based on the patients' address at the time of diagnosis, there was no decrease in the number of cases from outside of the Tochigi prefecture. Regarding the month of diagnosis, there was a notable decrease in the number of registered patients in May and August of 2020. Among the decrease of 836 cases detected by screening, 689(82.4%) were cases of stomach, lung, colorectum, female breast, cervix, and prostate cancer. The number of registered cases of malignant lymphoma, leukemia, and cancer of the oral cavity and pharynx, pancreas, bone and soft tissue, corpus uteri, and bladder did not decrease between 2019 and 2020. In terms of stage of cancer, the number of registered cases of carcinoma in situ, localized cancer, and regional lymph node metastases was lower in 2020 than in 2019, but there was no decrease in the number of registered cases of distant metastases or regional extension.ãConclusion The number of cancer cases registered in 2020 was lower than in 2019, and the degree of change varied by age, hospital, site, whether the case was detected by screening, and stage of cancer. In particular, a marked decrease was observed in the number of cases detected by screening. Furthermore, the decrease in the number of cancer cases registered in May and August of 2020 were believed to be due to the peak in the spread of COVID-19 and the associated declaration of a state of emergency.
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The significant deficit in cancer diagnoses in 2020 due to COVID-19 pandemic disruptions in health care, can pose challenges in the estimation and interpretation of long-term cancer trends. Using SEER (2000-2020) data, we demonstrate that inclusion of the 2020 incidence rates in joinpoint models to estimate trends can result in a poorer fit to the data, less accurate, or less precise trend estimates, providing challenges in the interpretation of the estimates as a cancer control measure. To measure the decline in 2020 relative to 2019 cancer incidence rates, we use the percent change of rates in 2020 compared to 2019. Overall, SEER cancer incidence rates dropped approximately 10% in 2020, but for thyroid cancer the drop was as big as 18%, after adjusting for reporting delay. The 2020 SEER incidence data is available in all SEER released products, except for joinpoint estimates of trends and lifetime risk of developing cancer.
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OBJECTIVES: The Estonian National Mental Health Study (EMHS) was conducted in 2021-2022 to provide population-wide data on mental health in the context of COVID-19 pandemic. The main objective of this paper is to describe the rationale, design, and methods of the EMHS and to evaluate the survey response. METHODS: Regionally representative stratified random sample of 20,000 persons aged 15 years and older was drawn from the Estonian Population Register for the study. Persons aged 18 years and older at the time of the sampling were enrolled into three survey waves where they were invited to complete an online or postal questionnaire about mental well-being and disorders, and behavioral, cognitive, and other risk factors. Persons younger than 18 years of age were invited to fill an anonymous online questionnaire starting from wave 2. To complement and validate survey data, data on socio-demographic, health-related, and environmental variables were collected from six national administrative databases and registries. Additionally, a subsample was enrolled into a validation study using ecological momentary assessment. RESULTS: In total, 5636 adults participated in the survey wave 1, 3751 in wave 2, and 4744 in wave 3. Adjusted response rates were 30.6%, 21.1%, and 27.6%, respectively. Women and older age groups were more likely to respond. Throughout the three survey waves, a considerable share of adult respondents screened positive for depression (27.6%, 25.1%, and 25.6% in waves 1, 2, and 3, respectively). Women and young adults aged 18 to 29 years had the highest prevalence of depression symptoms. CONCLUSIONS: The registry-linked longitudinal EMHS dataset comprises a rich and trustworthy data source to allow in-depth analysis of mental health outcomes and their correlates among the Estonian population. The study serves as an evidence base for planning mental health policies and prevention measures for possible future crises.
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Mycophenolate mofetil and rituximab have been shown to be considerably associated with poorer outcomes following SARS-CoV-2 infection. Such agents were associated with longer hospital stay as well as severe COVID-19 outcomes (infection-related complications, intensive care unit admission, and mortality). Using the data of the COVID-19 Global Rheumatology Alliance (GRA) registry of inflammatory rheumatic disease (IRD) patients in Kuwait, who had COVID-19 from March 2020 to March 2021, revealed 4 mortality cases (3 cases used CD-20 inhibitors as monotherapy and 1 case used mycophenolate mofetil/mycophenolic acid as monotherapy). This article describes the characteristics and course of disease among 4 patients with IRD who died following COVID-19 infection at Jaber Al Ahmed Hospital, Kuwait. The current series raises the intriguing prospect that IRD patients may have a varying risk of unfavorable clinical outcomes depending on the type of biological agents they were given. Rituximab and mycophenolate mofetil should be used with caution in IRD patients, particularly if they have concomitant comorbidities that put them at a high likelihood of developing severe COVID-19 outcomes.
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Resumen La Sociedad Española de Cirugía Cardiovascular y Endovascular, de manera conjunta al registro general de actividad 2021, muestra sus datos de actividad en pacientes con cardiopatía congénita del período temporal 2012-2021, basado en un registro voluntario y anónimo de los centros participantes. En 2021, aún marcado por las secuelas de la pandemia COVID-19, persiste el descenso de actividad quirúrgica en cardiopatías congénitas (CC) del 2020 respecto a los años previos. Presentamos agrupados los datos de actividad de la última década, para reflejar mejor nuestros resultados con estas patologías relativamente infrecuentes. En este tiempo se realizaron en España 20.139 cirugías de CC, que suponen el 9,5% de la cirugía cardiovascular mayor realizada en nuestro país durante ese tiempo. El 81,5% de las cirugías congénitas se hicieron con circulación extracorpórea y el 18,5% restante sin ella. Destacamos las intervenciones neonatales y en adultos, que asocian elevada complejidad y suponen, respectivamente, el 18% y el 21% de la actividad total. Las CC operadas más prevalentes continúan siendo los defectos septales en los casos que requieren circulación extracorpórea y los ductus en pacientes operados sin circulación extracorpórea. Los datos se presentan ajustados a la escala Aristóteles básico de riesgo quirúrgico preoperatorio. La mortalidad observada en cirugías con circulación extracorpórea fue del 3,07% (Aristóteles: 6,29), y en cirugías sin circulación extracorpórea, del 2,25% (Aristóteles: 4,82). Nuestro registro nacional de actividad quirúrgica en CC muestra buenos resultados, permite establecer comparaciones a nivel nacional e internacional, para diseñar estrategias de mejora, fijar objetivos y aumentar la calidad de nuestras actuaciones. The Spanish Society of Cardiovascular & Endovascular Surgery presents the 2012-2021 report of the activity in congenital cardiovascular surgery, based on a voluntary and anonymous registration involving most of Spanish centres. This article is complementary to the 2021 cardiovascular surgery annual report, and they are published together. In 2021, still marked by the aftermath of the COVID-19 pandemic, the decline in our 2020 congenital activity persists, compared with previous years. We included data from the previous 10years, in order to obtain real information related to our activity with these relatively scarce pathologies. In the last decade, a total of 20,139 congenital heart surgeries were performed, accounting for 9.5% of all major surgery (congenital +acquired) performed in Spain during that period. Of these surgeries, 81.5% of them required extracorporeal circulation and 18.5% not. We highlight the interventions in neonates and adult patients, which mean respectively 18% and 21% of our whole activity and are a real challenge. The most prevalent congenital heart pathologies operated on were: septal defects in cases requiring extracorporeal circulation, and ductus in patients without extracorporeal circulation. The presented data are adjusted to the basic Aristotle score of preoperative surgical risk. The observed mortality of surgeries with extracorporeal circulation was 3.07% (Aristotle: 6.29), and without cardiopulmonary bypass 2.25% (Aristotle: 4.82). Our national registry of surgical activity in congenital heart disease shows good results, allows us to compare ourselves within a national and international framework, design improvement strategies, set objectives and improve the quality of our actions.
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Registries play an instrumental role in facilitating the transfer, aggregation, and analysis of standardized data in health information exchange (HIE). One such example is a health worker registry (HWR), a central, authoritative registry that maintains the unique identities of health workers according to a defined, minimum data set. Currently, data comprising workers' information—such as education, licensure, and place of employment—are collected through disparate methods and maintained in a variety of information systems. Harmonization of these data via an HWR can support interoperability and comparability of worker information across systems, thereby facilitating efficient workforce enumeration, planning, regulation and deployment, verification of training and education, identification of workforce shortages, and rapid communication and coordination of emergency response. In fact, HWR technologies played a role in coordinating response to both Ebola in West Africa in 2014 and more recently in response to COVID-19, making a HWR integral to nations' infrastructure upgrades postpandemic. This chapter identifies who is considered a "health worker” and why a registry of these individuals is a useful component of an HIE, especially in the wake of the COVID-19 pandemic. It also provides guidance on selection of data elements and standards to include in the development of an HWR. © 2023 Elsevier Inc. All rights reserved.
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Comprehensively identifying and monitoring health facilities where care is delivered is critical to care coordination as well as public health. This became poignantly clear during the COVID-19 pandemic. Currently, few sources exist which can provide canonical identification of healthcare facilities. Furthermore, quantifying facility-specific services and infrastructure in a standard manner ranges from insufficient to nonexistent. A health facility registry provides a central authority to store, manage, and share health facility identification, services, and resources data with a wide range of stakeholders. Such universal collection and standardization of these data may support care coordination, public health responsiveness, quality improvement, health services research, health service planning, and health policy development. This chapter introduces the concept of a facility registry and provides scenarios in which stakeholders would benefit from facility data. The chapter further discusses unique identifiers, data collection, and the metadata necessary for establishing and maintaining a facility registry. © 2023 Elsevier Inc. All rights reserved.
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Objectives: To evaluate vaccination among patients with inflammatory rheumatic diseases initiating disease-modifying antirheumatic drugs (DMARD) Methods: Data from the real-world life PANLAR's register of consecutive patients diagnosed with RA, PsA, and axSpa (2010 ACR-EULAR /2006 CASPAR-2009 ASAS) from Dec 2021 to Dec 2022 were analyzed. Prevalence of recommended vaccinations were compared between different inflammatory rheumatic diseases. Categorical variables were expressed as %. Tables were analyzed with chi2 or Fisher tests, continuous variables (median, IQR)with the Kruskal-Wallis test, according with the variables type. A p value <=0.05 was considered significant. Result(s): 608 patients were included. Among patients with rheumatoid arthritis (RA), psoriatic arthritis (PsA), and axial Spondyloarthritis (axSpA) are presented in the table. RA and axSpA seemed to have lower vaccination rate of pneumococcal vaccines than PsA. (p = 0.045 for conjugate anti pneumococcal vaccine in RA vs PsA). A large percentage of the population was vaccinated against COVID-19. There was a high rate of influenza vaccination in all three diseases. Conclusion(s): In Latin America, anti-pneumococcal vaccination is low, especially in patients with RA and axSpA. For other vaccines there was an acceptable level of vaccination without differences between diseases.
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BACKGROUND: The inconsistent European vaccine trial landscape rendered the continent of limited interest for vaccine developers. The VACCELERATE consortium created a network of capable clinical trial sites throughout Europe. VACCELERATE identifies and provides access to state-of-the-art vaccine trial sites to accelerate clinical development of vaccines. METHODS: Login details for the VACCELERATE Site Network (vaccelerate.eu/site-network/) questionnaire can be obtained after sending an email to. Interested sites provide basic information, such as contact details, affiliation with infectious disease networks, main area of expertise, previous vaccine trial experience, site infrastructure and preferred vaccine trial settings. In addition, sites can recommend other clinical researchers for registration in the network. If directly requested by a sponsor or sponsor representative, the VACCELERATE Site Network pre-selects vaccine trial sites and shares basic study characteristics provided by the sponsor. Interested sites provide feedback with short surveys and feasibility questionnaires developed by VACCELERATE and are connected with the sponsor to initiate the site selection process. RESULTS: As of April 2023, 481 sites from 39 European countries have registered in the VACCELERATE Site Network. Of these, 137 (28.5 %) sites have previous experience conducting phase I trials, 259 (53.8 %) with phase II, 340 (70.7 %) with phase III, and 205 (42.6 %) with phase IV trials, respectively. Infectious diseases were reported as main area of expertise by 274 sites (57.0 %), followed by any kind of immunosuppression by 141 (29.3 %) sites. Numbers are super additive as sites may report clinical trial experience in several indications. Two hundred and thirty-one (47.0 %) sites have the expertise and capacity to enrol paediatric populations and 391 (79.6 %) adult populations. Since its launch in October 2020, the VACCELERATE Site Network has been used 21 times for academic and industry trials, mostly interventional studies, focusing on different pathogens such as fungi, monkeypox virus, Orthomyxoviridae/influenza viruses, SARS-CoV-2, or Streptococcus pneumoniae/pneumococcus. CONCLUSIONS: The VACCELERATE Site Network enables a constantly updated Europe-wide mapping of experienced clinical sites interested in executing vaccine trials. The network is already in use as a rapid-turnaround single contact point for the identification of vaccine trials sites in Europe.
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COVID-19 , Orthomyxoviridae , Vaccines , Adult , Child , Humans , SARS-CoV-2 , EuropeABSTRACT
OBJECTIVE: To explore the medical evidence published until April 20, 2022, about the efficacy and safety of tocilizumab in COVID-19 patients. METHODOLOGY: Scoping review that included PubMed and Scopus, searching for clinical trials and observational studies in English and Spanish. Additionally, records of clinical trials from the International Clinical Trials Registry Platform were analyzed. RESULT(S): Fifty-four documents were included: retrospective cohort studies (n = 20), randomized clinical trials (n = 16), case control studies (n = 7), non-randomized clinical trials (n = 5) and prospective cohort studies (n = 6), with a total study population of 20,007 patients. There were 15 records of clinical trials of which 10 were registered in the US National Library of Medicine. CONCLUSION(S): Tocilizumab could be effective and safe to treat patients with moderate to critical COVID-19, in conjunction with additional immunomodulators and antivirals. A greater number of randomized clinical trials, however, are needed to explore the efficacy and safety of tocilizumab.Copyright © 2023 Comunicaciones Cientificas Mexicanas S.A. de C.V.. All rights reserved.
ABSTRACT
Background: The Cystic Fibrosis Learning Network (CFLN) is a group of 34 programs that work and learn together with shared measures and processes to improve patient outcomes. Interventions are organized into change packages (collected, actionable concepts to share tested, refined ideas across multiple care centers). Since 2016, these change packages have helped advance team level co-production and improve timely data entry (TDE) and quality and use of Cystic Fibrosis Foundation Patient Registry (CFFPR) data. In the context of the COVID-19 pandemic, in-person meetings were curtailed, and team membership changed often. New learning structures to promote peer-to-peer learning were needed to spread and sustain these interventions. The objective was to describe the shared multicenter learning method used to spread practices in two series: co-production (recruitment and onboarding of patient and family partners (PFPs)) and TDE entry into the CFFPR. Method(s): In the design phase of the learning structure, we developed objectives specific to each series. Community content experts refined the curriculum from the established change package concepts. Teams were recruited through an open invitation to all CFLN sites. and met virtually biweekly for 30-minute sessions for 10 to 12 weeks. CFLN content experts used the change packages to coach teams and share their experiences during learning structure huddles. These sessionswere followed by 2-week action periods to review and test change package ideas. Teams shared progress at each meeting in round-robin format. Progress toward smart aims, team experience, and participation were assessed using descriptive surveys before, during, at the end of the series, and 6 months after it closed. Result(s): In initial surveys, teams self-reported awide range of experiences with co-production and TDE into the CFFPR. Participating teamswere from pediatric and adult programs that varied in number of patients and geographic location. Four teams participated in the co-production series to recruit and onboard PFPs within 6 months of completion. In the 6-month follow-up survey, two of the four teams met their goal of recruiting and onboarding a new PFP. The remaining teams reported barriers related to institutional policies that limited training for volunteers. In the TDE series, five teams joined and aimed to improve TDE into the CFFPR within 8 months. All five teams are on target to meet this goal. For both series, action-period surveys revealed completion of tasks assigned (e.g., reviewof change package concepts, testing tools, process maps, barriers, facilitators). Feedback surveys collected during the final sessions of each series indicated that the learning structure helped teams meet expectations, learn something new, and increase confidence in the interventions. Conclusion(s): This learning structure for spreading standard interventions helped teams meet series' aims. The small-group structure allowed teams to learn and adapt coproduction and timely data change package ideas and sustain practices for at least 6 months. In future iterations, this learning structure could be used as a model to spread standard interventions to other programs in the CFLN and the larger care center network.Copyright © 2022, European Cystic Fibrosis Society. All rights reserved
ABSTRACT
Objectives : To describe impact of COVID-19 on lung cancer incidence, stage at diagnosis, treatment utilisation and timeliness of care in Victoria, Australia. Design : Retrospective study using population wide Victorian Cancer Registry data and clinical data from the Victorian Lung Cancer Registry, comparing data pre-COVID (2019 and Q1 of 2020) with the COVID era (April 2020-31/12/2020). Setting and participants : Population wide data on lung cancer diagnoses diagnosed in 2019 and 2020 in Victoria, and 4485 cases with additional clinical data. Result(s): Compared In the COVID-era, 177 fewer males (-12%) and 4 fewer females (-0.3%) were diagnosed with lung cancer. Stage at diagnoses for NSCLC was higher on average in Q2 2020 and was similar to the pre-COVID distribution in Q2 and Q4. No changes were detected in the stage distribution for SCLC. The proportion of patients whose time from referral to diagnosis was >=28 d decreased with increasing volume of referrals but was higher in the COVID era (74.6%) compared with the pre-COVID era (67.5%), not caused by a decrease in volume. The proportion of patients receiving any anti-cancer treatment reduced slightly from 84% in the pre-COVID era to 81% in the COVID era ( p = 0.022). Time from diagnosis to treatment (>=14 d;37.3% of patients on average) was not associated with volume of new diagnoses, nor did change in the COVID-era ( p = 0.13). The proportion of NSCLC patients who received guideline concordance treatment did not differ between pre-COVID (83.1%) and the COVID era (81.7%;p = 0.31).