In 1997, the World Health Organization recommended establishing an international registry of α1-antitrypsin deficiency. The objective of the present article is to describe the organisation of an international network of registries, the Alpha One International Registry (AIR), and the processes of enrolling and entering data.By the end of 2005, the registry included individuals from 21 countries (from four continents). The inclusion criterion was either phenotypes PiZZ, PiSZ or other severely deficient variants. Demographic and clinical information have been collected by a standardised questionnaire, translated for each country. Data are transferred to the AIR database at the Dept of Respiratory Medicine, University Hospital, Malmö, Sweden, either by e-mail orviatwo web-enabled questionnaires in HTML. All data are merged and checked for consistency and missing values.Collection of data started in 1999 and, by September 2005, data on 2,150 individual patients (1,180 male) had been submitted. Of these, 1,855 (84%) have phenotype PiZ, 181 (8%) PiSZ and 114 (5%) other rare Pi phenotypes. The mean age at inclusion was 49.8 yrs (sd = 13.3) and the majority were index cases (64.1%).The Alpha One International Registry is the largest specific α1-antitrypsin deficiency registry, fulfilling a major World Health Organization recommendation. The success related to the convergence of national registries into a common database creating a unique registry beyond geographic boundaries and encompassing α1-antitrypsin deficiency from various ethnic groups.
Despite the challenges of the SARS-CoV-2 pandemic, seasonal allergies and asthma require
This project is pioneering in terms of its purpose - the definition of quality standards for AITCs - and for the use of structured participation techniques - a combination of the RAND/UCLA and Delphi methods. The results, together with some minimum standards for quality and safety in administering AIT, is a set of quality criteria for AITC accreditation supported by a broad panel of SEAIC experts.
Background: Allergology has been a recognized medical specialty in Spain, with fully defined aims and competencies for more than 4 decades. However, in recent years, its visibility seems to have decreased somewhat. Objectives: To identify which specific factors have contributed to the waning of the importance of the specialty and find tangible solutions to consolidate its place as a front-line medical specialty. Material and methods: An online population survey comprising 60 items of interest was prepared. The degree of agreement and the level of satisfaction with each item were assessed, and implementable initiatives in the short, medium, and long terms were defined in order to provide solutions to the issues identified. Results: The survey was completed by a total of 167 specialists with an average of 18 years’ experience. Most were from public reference hospitals, and 29.3% were heads of department. The line of action for which a good degree of agreement was achieved was to promote the inclusion of an allergist in multidisciplinary teams. The priority lines of action were to improve undergraduate and graduate training in allergology and specialized nursing, to identify curricula in Spain, and to develop robust teaching projects. Conclusions: The results revealed a high degree of homogeneity between professionals. The basic pillars highlighted were as follows: quality training, knowledge, and research in immunotherapy; an innovative portfolio of services endorsed by clinical practice guidelines; and presence in multidisciplinary teams and relevant hospital committees.
BackgroundComplementary and alternative medicine (CAM) use has grown considerably, although there is little research about its prevalence in cancer patients in Europe.PurposeThe main objective of this study was to determine the prevalence of CAM use in adult patients on antineoplastic treatment in a referral cancer centre. The study focused on the use of oral CAM, as pharmacokinetic interactions have been described with chemotherapy.Material and methodsResearchers went to the ambulatory treatment unit of a hospital for 2 weeks. Patients were invited to complete a questionnaire regarding CAM use and sociodemographic variables (age, gender, marital status, educational level). Clinical data were extracted from medical databases (primary tumour, stage of cancer, number of treatments received). Descriptive statistics were calculated and differences between CAM and non-CAM users were assessed using the χ2 test, with the SPSS program. This was an observational, cross sectional study.Results316 adult cancer patients were included. 32.3% of patients on antineoplastic treatment reported CAM use. 89% of these patients were ingesting products. Herbs were the most commonly used (66%), followed by natural products (39%, regardless of dietary supplements), vitamins/minerals (35%) and homeopathy (18%). 81% of patients started to use CAM after diagnosis. The main source of information about CAM was family/friends (69%); healthcare professionals did not reach 8%. 65% of patients seemed to have benefits from using CAM, especially improvements in both their physical and psychological well being (29%). Only 2% found CAM of benefit to fight cancer. Independent predictors of CAM use were female sex (p = 0.027), age ≤55 years (p = 0.000), both equal to what other reports showed, and secondary education (p = 0.003). No differences were found in the frequency of CAM use with regard to type and stage of cancer, unlike other studies.ConclusionA considerable proportion of patients use CAM at the same time as antineoplastic therapy. These practices are mainly initiated after diagnosis and consist of product intake. Precisely, this type of CAM is the one at risk of interacting with chemotherapy. The findings of this study can serve as a guide to identify potential patients who may require advice on CAM in medical and pharmacist consultations.References and/or AcknowledgementsOncology Department, CHN.No conflict of interest.
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