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Aims To describe clinical and demographic characteristics at baseline of a European cohort of adults with congenital heart disease CHD and to assess mortality and morbidity in a 5 year follow-up period. The patients were included retrospectively and followed until the end of for a median follow-up of 5. Notwithstanding their overall relatively good functional class and low mortality over the follow-up period, a considerable proportion of the patients had a history of endocarditis, arrhythmias, or vascular events. There were major differences between the eight defects, both in morbidity and regarding specific characteristics. Outcomes were worst in cyanotic defects and in the Fontan circulation, but a considerable proportion of the other patients also suffer from cardiac symptoms. In particular, arrhythmias are common. Conclusion The spectrum of adult CHD in Europe emerging from this survey is one of a predominantly young population with substantial morbidity but relatively low mortality in a 5 year period. The perspectives opened thereby are especially attractive in the field of congenital heart disease CHD , in which scarcity of data is the norm rather than the exception. The existence of a substantial population of adults born with a cardiac defect is a relatively new phenomenon that has resulted from advances in paediatric cardiology, cardiac surgery, and other subspecialties over the past few decades. Adults with CHD are often faced with symptoms, sequelae, and complications from residual defects and interventions, including arrhythmias, congestive heart failure, endocarditis, psycho-social problems, and early death. However, epidemiological characteristics of this population, needs for care, and clinical outcome are still poorly known. In contrast to other cardiovascular diseases, not more than a few multi-centre trials have been performed and there have been no large randomized trials addressing treatment strategies. Thus, current guidelines for the management of adults with CHD are based mainly on non-randomized studies, case series, and results of consensus conferences. Considering the aforementioned issues, the European Society of Cardiology has supported this survey to describe the spectrum of disease and outcomes in adults with CHD and to evaluate the role of guidelines in clinical practice. Reporting on the results of this EHS, this article describes the patient population and the manifestation of morbidity and mortality in a 5 year follow-up period. The set-up of the study was devised and monitored by an expert committee. The existing EHS network was used for recruitment of centres and data entry. Considering the low prevalence of the various defects and low frequency of cardiovascular events, the survey was designed as a retrospective cohort study. Consecutive patients fulfilling the inclusion criteria see what follows were included retrospectively at their first visit to the outpatient clinic in or else or and their follow-up data until April were recorded reviewing the medical chart. Patients were included by the local investigators. If more than one diagnosis applied, the diagnosis appearing first in the order in which they are listed earlier was chosen as the main diagnosis but in the case of ASD and VSD, the more severe of the two. Contact persons were approached by e-mail. Participation was on a voluntary basis and both specialized see what follows and non-specialized centres following a substantial population of adult patients with CHD were included. Specialized centres were defined as tertiary referral centres meeting all three of the following criteria: availability of paediatric cardiology or congenital cardiac surgery, at least one cardiologist dedicated to adult CHD, and at least congenital outpatient visits per year. Demographical and clinical data were derived from patients' medical records and entered online in a web-based electronic case record form CRF. The CRF was developed under the auspices of the Expert Committee and data were entered by the investigators themselves or by specially trained data collection officers. Patient data were entered anonymously, with only a number to identify the centre and another indicating the order of entry. The CRF was supplied with a software-implemented utility for automated checking of data for consistency and completeness and to ensure that values were not excessively out of the normal range. The database was opened on 1 July and closed on 30 April The following data were collected: a general section of the CRF assessed demographic data; the use of medication; diagnostic procedures performed during follow-up; clinical baseline characteristics such as functional status and history of endocarditis, arrhythmias, or vascular events; pregnancies; and vital status at the end of follow-up. Arrhythmias considered were supraventricular arrhythmias and ventricular arrhythmias, but premature beats were excluded. In separate sections devoted to the individual defects, defect-specific diagnostic findings both quantitative and qualitative at study entry as well as changes in the parameters assessed, which occurred during follow-up, were to be recorded. In addition, it was required to indicate which interventions surgical or transcatheter had been performed before study entry and during follow-up. Statistical methods used were mainly descriptive. Categorical variables are presented as percentages and numbers: continuous variables as means standard deviation for normally distributed variables and as medians interquartile range for non-normally distributed data. Outcomes of reproductive behaviour in women were assessed by calculating the percentages of females who had at least one full-term pregnancy before the end of follow-up. The corresponding measure for a hypothetical age-matched sample of the general Dutch population was calculated using life-tables made available by the national statistical bureau Statistics Netherlands 7. These provide, for each year going back to and each age, the number of first-borns. Although this data may allow some comparisons, no hypothesis testing was performed for this measure of childbearing, as the Dutch general population was not considered to be an entirely appropriate standard. In the manner described earlier, centres were identified to be interested in participating. Eighty-one centres actually started to enter patient data. One of these centres did not continue as a result of a reorganization within the hospital; another centre appeared not to have enough patients to include. Thus, ultimately 79 centres participated in 26 countries. A total of cases were included. Forty-eight of the 79 participating centres were specialized as mentioned earlier. Details on participating centres as well as the number of patients included per country are given in the Appendix. Eighty-seven per cent of the patients were included at specialized centres. After scrutiny of the data for completeness and consistency, patients were selected for extensive analysis. Inclusion per defect is shown in Table 1. Median follow-up was 5. In seven cases 0. The age distribution at baseline was strongly skewed, with most patients in their twenties or thirties see Table 1. The overall median age was As shown in Table 1 , median age varied per defect, reflecting the severity of the condition. The oldest patient was an year-old woman with an ASD. In addition, the proportion of females differed per defect. In the last column of Table 1 , for each defect the proportion of patients displaying a certain characteristic relevant for that specific defect mainly relating to previous interventions is recorded. Within the group of cyanotic defects, Eisenmenger patients had a significantly lower exercise capacity compared with other cyanotic patients proportion of patients with NYHA Class greater than I, Also recorded in Table 2 is the medical history at inclusion regarding arrhythmias, endocarditis, and vascular events. A total of patients 2. Table 3 provides the number of patients who died of any cause all-cause mortality and those who died of cardiovascular causes. Twenty-seven patients were given an implantable cardio-defibrillator. Not more than 21 of these patients underwent more than one procedure. Findings regarding the number of outpatient visits and frequency of investigations are shown in Table 4. Outpatient visits, expressed as the number of visits per patient-year, showed that a patient visited the outpatient clinic approximately three times per 2 years. Transthoracic echography was the most frequent type of diagnostic procedure, and its use did not vary very much among the different defects. Transoesophageal echocardiography was used most frequently in ASD. Magnetic resonance imaging was used most frequently in CoA and relatively infrequently in Marfan syndrome. Finally, Table 6 displays the proportion of females who had at least one full-term pregnancy ever by the end of follow-up. Also displayed in the same table are the corresponding figures for an age-matched sample of the general Dutch population see Methods. The spectrum of adult CHD in Europe emerging from this survey is one of a predominantly young population with substantial morbidity but relatively low mortality in a 5 year period. The majority of patients have no or only mild functional limitations. However, there are major differences between the eight congenital heart conditions studied, both in severity and regarding specific characteristics. To our knowledge, this is the first study reporting on the functional status of a large group of patients and a range of different defects. It is encouraging that the majority of patients did not have severe functional limitations. Cyanotic defects and the Fontan circulation are obviously among the most severe congenital heart conditions, as was also reflected in the mortality rates. Cyanosis due to an intractable right—left shunt is a multi-system disorder with a chronic and progressive course. In contrast to these defects with prominent systemic effects, mortality was low at the other end of the spectrum. In particular, the mortality data on ASD indicate that some of the older studies overestimated mortality. It is clear that the course of CHD is marked by arrhythmias in a substantial part of the patient population. Arrhythmias are the most frequent cause of hospitalization. Differences in prevalence of arrhythmias between the defects roughly reflect the different pathological arrhythmogenic substrates. Arrhythmias are known to be a frequently encountered problem in TGA, Fontan circulation, and tetralogy of Fallot. ASDs and the concomitant volume overload of the right atrium also frequently cause arrhythmias. In a group of patients selected for surgery, Gatzoulis et al. Unfortunately, operative closure introduces a new substrate for arrhythmogenicity, and in patients with closed ASD the incidence is still high. It is hoped that catheter-based closure will reduce the occurrence of rhythm disturbances. Because of the relative novelty of this technique, in our cohort, only a minority of patients had undergone such closure at the time of inclusion. Defects associated with the highest endocarditis risk include unclosed VSDs, repaired tetralogy of Fallot, and cyanotic conditions. Daliento et al. Moreover, in contrast to earlier reports, cases of endocarditis did occur in Fontan circulation and TGA corrected by Mustard repair. Although endocarditis might be slightly over-represented in our cohort because of the manner of selection of the patients for this survey see what follows , this large-scale study shows that endocarditis remains an important complication. In theory, the Fontan repair should remove one important cause of thromboembolism, namely an open connection between the right and left sides of the heart at least in Fontan procedures without a surgically created fenestration. In contrast, supraventricular arrhythmias are frequent after repair discussed earlier , whereas some types of Fontan operations introduce synthetic conduits in the circulation. Moreover, the Fontan circulation is known to be associated with abnormalities in the coagulation profile, which may lead both to thromboembolism and bleeding complications. Perloff et al. In contrast, Ammash and Warnes 23 found that Apart from changes in the composition of the blood, which result from hypoxemia hyperviscosity, microcytosis , interplay with other risk factors such as hypertension and atrial fibrillation appears to play a role in the increased frequency of cerebrovascular events in this group of patients. Also bleeding events occurred often. In our group, the percentage of patients with bleeding problems was almost equal to that of patients suffering from thrombotic complications. Hypertension did not seem to play an important role in the patients of this survey, except in the case of CoA. In fact, hypertension is a serious consequence of CoA and prevention of its complications is a major principle of management. The fact that in our cohort almost half of the CoA patients were hypertensive is not exceptional. The relatively high prevalence of hypertension among ASD patients is probably partly due to the higher age of this group, but a role for pathophysiological mechanisms cannot be excluded. It should be noted that the manner in which patients were selected for this survey has introduced a bias towards a more severe range of morbidity. This is especially apparent when we consider the number of interventions performed. In contrast, the frequency of interventions in adults with CHD underscores the need for staff with sufficient training and expertise. In our cohort, a considerable proportion of patients had pacemakers, which should alert us, again, to the prominence of often complex rhythm disturbances. The use of medication is, to some extent, another indicator of morbidity, although some drugs are prescribed for prophylaxis. We found that more than half of the patients were on some form of chronic medication. However, even among ASD patients, a significant proportion of patients did use drugs. The types of drugs used, of course, largely reflect the prevalence of particular forms of morbidity among the different defects. The high proportion of Fontan patients using anti-thombotics and anti-arrhythmic agents are a case in point. The use of anti-arrhythmic agents and anti-thrombotics was more frequent than in previously reported studies. It is noteworthy that, even though the use of aspirin and coumarins is not generally recommended in cyanotic disease, almost one out of every five cyanotic patients was using one of these drugs. The issue of organization of care and planning of future needs of this rapidly growing population is one of the central concerns in the evolution of the adult CHD discipline. The age distribution of this population implies that most women are in their reproductive age. As this survey was not designed to assess the reproductive history of the female patients in an exhaustive manner, the pregnancy data collected were summarized into a simple measure. Considering merely the proportion of females with at least one full-term pregnancy, it seems that, in the case of the less severe defects, childbearing is not very much affected by the presence of the defect. It is remarkable, and testimony to the success of the management of CHD, that, after correction, TGA still allows a substantial proportion of women to bear children. It should be noted that, generally, pregnancy is strongly advised against in these conditions. Finally, the demographic characteristics of our study population are largely consistent with what is known at present. The observation that the population is relatively young is in line with the fact that only after the major improvements in cardiac paediatric surgery in the middle of the previous century did the majority of patients begin to survive into adulthood. It is also apparent that patients with more severe conditions with a high mortality, in particular, the Fontan circulation and cyanotic defects, are even younger. Contrasts in the proportion of females among patients with the different defects can largely be traced to the differences in prevalence of the conditions at birth, 28 which suggest that mortality in the various defects is not gender-related. One of the problems in studying adult CHD is the large number of different lesions and clinical situations one may encounter. In designing this survey, a compromise had to be accepted between attempts at being comprehensive and the necessity to limit the amount of data collected. Therefore, it was decided to restrict the survey to eight of the most common congenital conditions. Participation was on a voluntary basis and data entry was done by the investigators on the basis of available patient records. Thus, missing data constitute an unavoidable aspect that might be a source of bias. The vast majority of patients included in the survey were being treated on a regular basis at a specialized centre for adult CHD. Many ASD patients were included in the centres to which they were referred for intervention. This is also illustrated by the improvements in NYHA functional class over the follow-up period, which are largely the result of interventions. Its successful completion has demonstrated the feasibility of large-scale international studies in adult CHD and indicates that the discipline has become broadly established, catering to the needs of an expanding relatively young population. With more than patients included, the data presented here form an important supplement to the currently available information that is largely derived from single institutions and a small number of patients with particular defects. The findings of this study confirm that morbidity is high and emphasize the importance of specialized care for the adult born with a heart defect. There was no national co-ordinator in the participating countries which are not mentioned in this list. Participating centres and investigators with the number of patients included per country: Armenia 60 : Karine Sargsyan, Yerevan. Austria 94 : Harald Gabriel, Vienna; B. Simma, Michael Fritz, Feldkirch. Israel : Rafael Hirsch, Petach Tikva. Macedonia 73 : Elizabeta Srbinovska Kostovska, Skopje. Bootsma, Zwolle; J. Winter, H. Broers, Tilburg; C. Werter, Adrie van den Dool, Roermond. Norway 75 : Erik Thaulow, J. Westby, Thomas Moller, Oslo. Gaia; Cristina Cruz, Porto. Turkey 2 : Haldun Muderrisoglu, Mehmet E. Korkmaz, Vahide Pimpek, Ankara. Lip, T. Values are percentage followed by numbers in parentheses. Use of anti-thombotics was assessed separately. Use of medication means the use of drugs for at least 3 months at any time prior to the end of follow-up. Percentage of females with at least one full-term pregnancy ever by the end of follow-up. Expected percentages have been calculated for an age-matched sample, with age at the end of follow-up as reference. American College of Cardiology. Care of the adult with congenital heart disease. J Am Coll Cardiol ; 37 : — CCS Consensus Conference update: recommendations for the management of adults with congenital heart disease. Part I. Can J Cardiol ; 17 : — CCS Consensus Conference update: Recommendations for the management of adults with congenital heart disease. Part II. Part III. European Society of Cardiology Task Force. Management of grown up congenital heart disease. Eur Heart J ; 24 : — Adult congenital heart disease in the Netherlands: Guidelines Oechslin E. Hematological management of the cyanotic adult with congenital heart disease. Int J Cardiol ; 97 : — Eisenmenger syndrome. Factors relating to deterioration and death. Eur Heart J ; 19 : — Influence of ventricular morphology on outcome after the Fontan procedure. Am J Cardiol ; 86 : — Long-term outcome and quality of life in adult patients after the Fontan operation. Am J Cardiol ; 93 : — The prognosis of atrial septal defect. Br Med J ; 1 : — Campbell M. Natural history of atrial septal defect. Br Heart J ; 32 : — Somerville J. Management of adults with congenital heart disease: an increasing problem. Annu Rev Med ; 48 : — Harris L, Balaji S. Arrhythmias in the adult with congenital heart disease. London: Churchill Livingstone, Atrial arrhythmia after surgical closure of atrial septal defects in adults. N Eng J Med ; : — Li W, Somerville J. Infective endocarditis in the grown-up congenital heart GUCH population. Long-term outcome of patients with ventricular septal defect considered not to require surgical closure during childhood. J Am Coll Cardiol ; 16 : — Thromboembolic complications after Fontan operations. Circulation ; 92 : II —II Incidence, outcome, and risk factors for stroke after the Fontan procedure. Abnormalities in liver function and coagulation profile following the Fontan procedure. Heart ; 82 : 40 — Risk of stroke in adults with cyanotic congenital heart disease. Circulation ; 87 : — Ammash N, Warnes CA. Cerebrovascular events in adult patients with cyanotic congenital heart disease. J Am Coll Cardiol ; 28 : — Survival and complication free survival in Marfan's syndrome: implications of current guidelines. Heart ; 82 : — Outcome of pregnancy after the Mustard operation for transposition of the great arteries with intact ventricular septum. J Am Coll Cardiol ; 24 : — Pregnancy in cyanotic congenital heart disease. Outcome of mother and fetus. Circulation ; 89 : — Pregnancy outcomes after the Fontan repair. The epidemiology of cardiovascular defects. Part I: study based on data from three large registries of congenital malformations. Pediatr Cardiol ; 24 : — Oxford University Press is a department of the University of Oxford. It furthers the University's objective of excellence in research, scholarship, and education by publishing worldwide. Sign In or Create an Account. Advertisement intended for healthcare professionals. Sign in through your institution. ESC Publications. Advanced Search. Search Menu. Article Navigation. Close mobile search navigation Article Navigation. Volume Article Contents Abstract. Appendix: organization of the survey. Journal Article. The spectrum of adult congenital heart disease in Europe: morbidity and mortality in a 5 year follow-up period: The Euro Heart Survey on adult congenital heart disease. Peter Engelfriet , Peter Engelfriet. E-mail address : b. Oxford Academic. Google Scholar. Eric Boersma. Erwin Oechslin. Jan Tijssen. Michael A. Harald Kaemmerer. Philip Moons. Folkert Meijboom. Rafael Hirsch. Luciano Daliento. Erik Thaulow. Barbara Mulder. Revision received:. Select Format Select format. Permissions Icon Permissions. Abstract Aims To describe clinical and demographic characteristics at baseline of a European cohort of adults with congenital heart disease CHD and to assess mortality and morbidity in a 5 year follow-up period. Open in new tab Download slide. Table 1 Open in new tab. Baseline characteristics. Inclusion n. Age a. Defect-specific information. Table 2 Open in new tab. History of morbidity and functional status at baseline. Supraventricular arrhythmias. Ventricular arrhythmias. NYHA I. Table 3 Open in new tab. Number of deaths. Table 4 Open in new tab. Follow-up evaluation: clinic visits and investigations. Outpatient visits. ASD II 1. Table 5 Open in new tab. No drugs. Beta-blocking agents. Other anti-platelets. Table 6 Open in new tab. Ever pregnant. General Dutch population a. J Am Coll Cardiol. Can J Cardiol. Eur Heart J. Int J Cardiol. Am J Cardiol. Br Med J. Br Heart J. Annu Rev Med. N Eng J Med. Pediatr Cardiol. All rights reserved. For Permissions, please e-mail: journals. Issue Section:. Download all slides. Views 5, More metrics information. Total Views 5, Email alerts Article activity alert. Advance article alerts. New issue alert. Receive exclusive offers and updates from Oxford Academic. Citing articles via Web of Science Prognosis after switching to electronic cigarettes following percutaneous coronary intervention: a Korean nationwide study. 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