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PubMed1994

Characteristics of Myocardial Infarction Episodes in Two Distant Communities: From the REGICOR Registry in Girona, Spain and the MITI Registry in Greater Seattle, USA.

Background: The objective of the study is to compare patient characteristics and outcome after myocardial infarction (MI) between two geographically and socially different communities. Methods/Results: The study was designed as an ecological comparison between a 1-year hospital registry of consecutive MIs in Seattle (1,400,000 inhabitants and a predominantly urban and suburban distribution) and nine hospitals in Giroma (500,000 inhabitants in a predominantly rural distribution). Hospitalization rates for MI are higher in Seattle (standardized rates of 2.5/1000 for men and 0.8/1000 for women) than in Girona (1.5/1000 for men and 0.2/1000 for women). In both registries men under age 60 accounted for 45.5% of cases. Women accounted for 25% of all MI episodes in Seattle and for only 16% in Giromi. Treatment with thrombolytic and beta-blocking drugs was twice as common in Seattle hospitals as in Girona. Hospital mortality in tertiary care hospitals was similar in both registries, but mortality in local hospitals (having no coronary care unit) in Giroma was significantly higher than other hospital mortality rates for MI. Conclusions: The higher in-hospital mortality rate may in large part be explained by the absence of a coronary care unit. However, the dispersion of Girona's population and the lack of specific programs to provide emergent specialized care to possible MI patients may also contribute to the higher in-hospital mortality rate in Girona.

Journal Article↗

PubMed2001

Primary angioplasty versus intravenous thrombolysis in acute myocardial infarction: can we define subgroups of patients benefiting most from primary angioplasty? Results from the pooled data of the Maximal Individual Therapy in Acute Myocardial Infarction Registry and the Myocardial Infarction Registry.

OBJECTIVES: We sought to determine the effectiveness of primary angioplasty compared with thrombolysis in clinical practice. BACKGROUND: In clinical practice, primary angioplasty for the treatment of acute myocardial infarction (AMI) has not yet been proven more effective than intravenous thrombolysis, nor have subgroups of patients been identified who would perhaps benefit from primary angioplasty. METHODS: The pooled data of two AMI registries--the Maximal Individual TheRapy in Acute myocardial infarction (MITRA) study and the Myocardial Infarction Registry (MIR)--were analyzed. A total of 9,906 lytic-eligible patients with AMI, with a pre-hospital delay of < or =12 h, were treated with either primary angioplasty (n = 1,327) or thrombolysis (n = 8,579). RESULTS: Despite differences in the patients' characteristics and concomitant diseases between the two groups, the prevalence of adverse risk factors was balanced. Univariate analysis of hospital mortality showed a more favorable course for patients treated with primary angioplasty: 6.4% versus 11.3% (odds ratio [OR] 0.54, 95% confidence interval [CI] 0.43 to 0.67). This was confirmed by logistic regression analysis (multivariate OR 0.58, 95% CI 0.44 to 0.77). Primary angioplasty was associated with a lower mortality in all subgroups analyzed. We observed a significant correlation between mortality and absolute risk reduction (r = 0.82, p < 0.0001) in the different subgroups: as mortality increased, there was an increase in absolute benefit of primary angioplasty compared with thrombolysis. CONCLUSIONS: These large registry data showed the effect of primary angioplasty to be more favorable than thrombolysis for the treatment of patients with AMI in clinical practice. This effect was not restricted to special subgroups of patients. As mortality increased, the absolute benefit of primary angioplasty also increased.

Aged↗

PubMed2001

Differences in treatment and outcome of patients with acute myocardial infarction admitted to hospitals with compared to without departments of cardiology; results from the pooled data of the Maximal Individual Therapy in Acute Myocardial Infarction (MITRA 1+2) Registries and the Myocardial Infarction Registry (MIR).

AIMS: The specialty of the admitting physician may influence treatment and outcome in patients with acute myocardial infarction. METHODS AND RESULTS: The pooled data of three German acute myocardial infarction registries: the Maximal Individual Therapy in Acute Myocardial Infarction (MITRA) 1+2 studies and the Myocardial Infarction Registry (MIR) were analysed. Patients admitted to hospitals with departments of cardiology were compared to hospitals without such departments. A total of 24 814 acute myocardial infarction patients were included, 9020 (36%) patients at 91 (29.8%) hospitals with departments of cardiology and 15 794 (64%) at 214 (70.2%) hospitals without cardiology departments. There were only minor differences in patient characteristics and prevalence of concomitant diseases between the two types of hospital. The first electrocardiogram was more often diagnostic at hospitals with cardiology departments (71.8% vs 66.5%, P<0.001). Reperfusion therapy and adjunctive medical therapy, such as aspirin, beta-blockers and ACE-inhibitors were used more often at cardiology departments (all P -values <0.001), even after adjustment for confounding parameters. Treatment improved at both types of hospital over time. Admission to a hospital with a department of cardiology was independently associated with a lower hospital mortality (14.2% vs 15.4%, adjusted OR=0.91; 95%CI: 0.83-0.99). Additional logistic regression models showed that the higher use of reperfusion therapy and recommended concomitant medical therapy was responsible for most of the survival benefit at such hospitals. CONCLUSION: Treatment of acute myocardial infarction patients at hospitals with departments of cardiology was independently associated with a higher use of recommended therapy and a lower hospital mortality compared to hospitals without such departments.

Aged↗

PubMed1991

Patient age and results of balloon aortic valvuloplasty: the Mansfield Scientific Registry experience. The Mansfield Scientific Aortic Valvuloplasty Registry Investigators.

Patients enrolled in the Mansfield Scientific Aortic Valvuloplasty Registry were followed up a mean of 7 months after balloon aortic valvuloplasty. Results were compared for patients less than 70, 70 to 79 and greater than or equal to 80 years of age at time of valvuloplasty. As assessed by aortic valve area indexed to body surface area, stenosis was more severe in the older patients and the incidence of congestive heart failure was also greater in those aged greater than or equal to 80 years. The results of valvuloplasty were comparable in all three age groups, and indexed final valve area was not significantly different among the groups. In-hospital mortality ranged from 4.2% to 9.4%, but this and other complications were not significantly different among the groups. Total 7 month mortality was 23%. As performed in this registry study, balloon aortic valvuloplasty produced similar results in older and younger patients, despite initially more severe disease in the older patients.

Age Factors↗

PubMed2004

Six-month outcomes in a multinational registry of patients hospitalized with an acute coronary syndrome (the Global Registry of Acute Coronary Events [GRACE]).

Relatively limited data are available, particularly from the perspective of a multinational registry, about the post-discharge outcomes and management practices of patients with an acute coronary syndrome (ACS). The objectives of this longitudinal study were to examine 6-month outcomes in a large multinational sample of patients hospitalized with an ACS. A total of 5,476 patients with ST-segment elevation acute myocardial infarction (STEAMI), 5,209 patients with non-ST-segment elevation acute myocardial infarction (NSTEAMI), and 6,149 patients with unstable angina pectoris discharged from 90 hospitals in 14 countries comprised the study population. The study sample was recruited from 18 cluster sites in 14 countries that are currently collaborating in the Global Registry of Acute Coronary Events (GRACE) study. The 6-month post-discharge death rates were 4.8% in patients with STEAMI, 6.2% in patients with NSTEAMI, and 3.6% in patients with unstable angina pectoris. Approximately 1 in 5 of each of our comparison groups were rehospitalized for heart disease during the 6-month follow-up, and approximately 15% of each of the respective study cohorts underwent coronary revascularization during follow-up. Demographic and clinical characteristics of post-discharge decedents were identified according to type of ACS. Our results suggest that a considerable proportion of patients who were discharged from the hospital after an ACS, with some differences noted according to type of ACS, remain at increased risk for adverse outcomes during the relatively brief post-discharge period. These data suggest the need for better long-term medical management and more intense follow-up of patients with an ACS to improve their long-term outlook.

Aged↗

PubMed2005

[Management of acute coronary syndromes in a new French coronary intensive care unit. The first four years of activity in the GRACE registry (Global Registry of Acute Coronary Events)].

UNLABELLED: The GRACE registry provides the opportunity to analyse management of acute coronary syndromes in the real word and the impact of hospital characteristics. In this setting, we compare the activity of a new coronary intensive care unit with regional data. METHODS: From January 2000 to December 2003, 376 eligible patients were involved (22% of regional inclusion). GRACE standard diagnosis were the following, for our centrer (for the cluster): ST elevation myocardial infarction 28% (37%), non-ST elevation myocardial infarction 32% (31%), unstable angina 33% (24%). Demographic characteristics were similar with a median age of 64 (vs 66) and a large majority of male (74 vs 81%). Medical history and cardiovascular risk factors were comparable. Predictors of hospital mortality were observed at the same rate: cardiogenic shock (3 vs 3%), congestive heart failure > Killip 2 (4 vs 4%), left ventricular ejection fraction (LVEF) lower than 40% (17 vs 16%), recurrent ischemic symptoms (8 vs 8%). Coronary artery bypass grafts were required in 5% (vs 2%). RESULTS: Drugs prescription rates were similar: aspirin at admission (95%) and at discharge (95%), betablocker at admission (70%) and at discharge (85%), statin at admission (< 30% in 2000, > 60% in 2003) and at discharge (< 60% in 2000 and > 80% in 2003), ticlopidin-clopidogrel at admission (< 20% in 2000 and > 40% in 2003), ACE inhibitor for LVEF < 40%, intravenous GPIIblIIa, and low molecular weight heparin (90%). Cardiac catheterisation (90%) and percutaneous coronary interventions (80%) were performed at the same rates in our center and in the cluster. Hospital death was similar (2 vs 4%). Discharge status was home for a large majority of patients (63 vs 76%). The median length of stay was five days and shorter than three days for patients with unstable angina. CONCLUSION: Based on GRACE registry data, the present evaluation revealed that our new center offered evidence-based medical and interventional therapy in patients with acute coronary syndromes at the same level than experienced institutions with similar results for hospital death and length of stay.

Aged↗

PubMed2005

Internet-based quality assurance registry for LDL apheresis QUASA--the apheresis registry.

Quality assurance measures have been demanded in the execution of extracorporeal LDL apheresis therapy (LDL apheresis) by the NUB-guidelines of the national committee of physicians and health insurance. The measures apply to specialist, organizational and mechanical requirements for the execution and billing of this method of treatment. Furthermore, as a result of the legal requirements of the SGB V, complementary BUB-guidelines were introduced in 1999. These should prove the therapeutic benefit of an LDL apheresis treatment. Beyond assuring quality of performance, documentation of the treatment is explicitly demanded. For the past two years, the non-profit QUASA gGmbH has developed a quality assurance registry for LDL apheresis based on those requirements. Since March 2003, the apheresis physicians can voluntarily take part in this registry through the internet. Beside the patient's medical history, data relevant to the treatment are also recorded. Because of the analysis of the national clinical data it will be possible for the first time, for the medical profession to fulfill the guidelines and ensure the quality of LDL apheresis.

Blood Component Removal↗

PubMed2000

Decreasing hospital mortality between 1994 and 1998 in patients with acute myocardial infarction treated with primary angioplasty but not in patients treated with intravenous thrombolysis. Results from the pooled data of the Maximal Individual Therapy in Acute Myocardial Infarction (MITRA) Registry and the Myocardial Infarction Registry (MIR).

OBJECTIVES: We investigated changes in the clinical outcome of primary angioplasty and thrombolysis for the treatment of acute myocardial infarction (AMI) from 1994 to 1998. BACKGROUND: Primary angioplasty for the treatment of AMI is a sophisticated technical procedure that requires experienced personnel and optimized hospital logistics. Growing experience with primary angioplasty in clinical routine and new adjunctive therapies may have improved the outcome over the years. METHODS: The pooled data of two German AMI registries: the Maximal Individual Therapy in AMI (MITRA) study and the Myocardial Infarction Registry (MIR) were analyzed. RESULTS: Of 10,118 lytic eligible patients with AMI, 1,385 (13.7%) were treated with primary angioplasty, and 8,733 (86.3%) received intravenous thrombolysis. Patients characteristics were quite balanced between the two treatment groups, but there was a higher proportion of patients with a prehospital delay of >6 h in those treated with primary angioplasty. The proportion of an in-hospital delay of more than 90 min significantly decreased in patients treated with primary angioplasty over the years (p for trend = 0.015, multivariate odds ratio [OR] for each year of the observation period = 0.84, 95% confidence interval [CI]: 0.73-0.96) but did not change significantly in patients treated with thrombolysis. Hospital mortality decreased significantly in the primary angioplasty group (p = 0.003 for trend; multivariate OR for each year = 0.73, 95% CI: 0.58-0.93). However, for patients treated with thrombolysis, hospital mortality did not change significantly (p for trend 0.175, multivariate OR for each year: 1.02, 95% CI: 0.94- 1.11). CONCLUSIONS: Compared with thrombolysis the clinical results of primary angioplasty for the treatment of AMI improved from 1994 to 1998. This indicates a beneficial effect of the growing experience and optimized hospital logistics of this technique over the years.

Angioplasty, Balloon, Coronary↗

PubMed1998

Influence of insurance type on the use of procedures, medications and hospital outcome in patients with unstable angina: results from the GUARANTEE Registry. Global Unstable Angina Registry and Treatment Evaluation.

OBJECTIVES: The purpose of this study was to investigate whether or not there is an association between managed care insurance and the delivery and outcome of care in patients presenting with unstable angina. BACKGROUND: The proportion of U.S. patients with managed care health insurance is increasing. This may be associated with recent improvements in the control of health care costs. It is unknown whether or not there is a difference in process of care in angina patients presenting with managed care versus fee-for-service health insurance. METHODS: We compared baseline characteristics, process and outcome of care in 636 patients with managed care insurance (MC) and 1,404 patients with fee-for-service (FFS) insurance who presented with unstable angina to 35 hospitals participating in the global Unstable Angina Registry and Treatment Evaluation (GUARANTEE) Registry. RESULTS: Although, there was little difference in baseline characteristics and hospital treatments between cohorts, MC patients were more likely to be discharged on guideline-recommended medications (aspirin and beta-adrenergic blocking agents). In addition, FFS patients were more likely to undergo cardiac catheterization (odds ratio = 1.25 95% confidence interval = 1.1 to 1.5), but not revascularization during the hospitalization. There was no difference in hospital mortality (0.9% versus 1.2% in MC versus FFS; p = 0.60). CONCLUSIONS: In patients admitted with suspected unstable angina, MC patients are less likely to undergo coronary angiography, but are more likely to be discharged on indicated medications.

Adrenergic beta-Antagonists↗

PubMed1991

Use of a clinical data registry to evaluate medical technologies. Experience from the International Bone Marrow Transplant Registry.

We reviewed the 18 disease-specific evaluations that used the data base of the International Bone Marrow Transplant Registry to determine the effectiveness of alternative strategies for bone marrow transplant. We identify 17 treatment variables that physicians can control and report the associations between these variables and five clinical endpoints: stable engraftment, graft-versus-host disease, development of interstitial pneumonia, relapse, and disease-free survival. We also suggest policies to promote active participation in establishing and operating a registry.

Bone Marrow Transplantation↗

PubMed1993

Hodgkin's disease during HIV1 infection: the French registry experience. French Registry of HIV-associated Tumors.

BACKGROUND: The first cases of Hodgkin's disease (HD) associated with HIV infection were reported in 1984. Since then, short series of seropositive patients suffering from HD have been published. In order to identify the characteristics, treatment response and outcome of HIV-associated Hodgkin's disease (HIV-HD), the data of HIV-HD patients recorded between 1987 and 1989 were analysed and compared with those of primary HD patient and with those of HIV-associated non-Hodgkin's lymphoma (HIV-NHL), registered during the same period. PATIENTS AND METHODS: The 45 cases of HD collected by the French registry of HIV-associated tumors between January 1987 and December 1989 were included in this study. All patients were clinically staged according to the Ann Arbor system. To compare HIV-HD characteristics with those of primary HD, we used a cohort of 407 patients with clinical stages (CS) IA to IVB, who were enrolled between September 1981 and August 1988 in a multicentric clinical trial. To identify the relationship between HIV-HD and the course of HIV infection we studied, when available, the routes of infection, initial CD4 cell count at the moment of HD diagnostic as well as the CDC class of HIV infection and compared these data with the same parameters observed in 142 HIV-NHL enrolled in the registry during the same period. RESULTS: HIV-HD is characterized by an increase in mixed-cellularity histology (49%), with a predominance of advanced stages (75%) and B symptoms (80%). A unique observation is made regarding mediastinal involvement, present in only 13% of HIV-HD (71% in primary HD). The HIV-HD/HIV-NHL ratio was significantly higher in intravenous drug abusers than in male homosexuals. Median CD4 cell count was 306/microliters at HIV-HD diagnosis, and only 11% of the cases were preceded by an AIDS manifestation. With standard therapy, 79% of the patients achieved complete remission, but hematological and infectious complications were very frequent. The progression to AIDS rate was 94% at two years and opportunistic infections were the most frequent cause of death. Overall two-year survival was 41% with 71% for patients with initial CD 4 cell counts higher than 300/microliter and 0% for those with CD4 cell counts lower than 300/microliter (P < 0.01). CONCLUSION: HIV-HD has a particular clinico-pathological profile when compared to primary HD, with a predominance of mixed-cellularity type, a high frequency of advanced stages and a high proportion of patients without mediastinal involvement. Moreover, HIV-HD seems to occur preferentially in the group of subjects infected by needle sharing. Standard HD therapy seems to be efficient but excessively toxic.

Adolescent↗

PubMed1997

An update from the International Bone Marrow Transplant Registry and the Autologous Blood and Marrow Transplant Registry on current activity in hematopoietic stem cell transplantation.

The International Bone Marrow Transplant Registry (IBMTR) and the Autologous Blood and Marrow Transplant Registry (ABMTR) are international research organizations that collect and analyze data on recipients of allogeneic and autologous hematopoietic stem cell transplants, respectively. Over 300 institutions in 47 countries contribute data to the IBMTR and over 150 institutions in North and South America contribute data to the ABMTR. The IBMTR and ABMTR database have information on more than 65,000 transplant recipients, about 40% of allogeneic transplantations performed since 1964, and about half of all autotransplantations in North and South America since 1989. Current transplant activity, as reported to the IBMTR and ABMTR, is summarized in this article as well as key findings from recent IBMTR and ABMTR studies.

Anemia, Aplastic↗

PubMed2004

Integrating the New York citywide immunization registry and the childhood blood lead registry.

In February of 2004, the New York City Department of Health and Mental Hygiene completed the integration of its childhood immunization and blood lead test registry databases, each containing over 2 million children. A modular approach was used to build a separate integrated system, called Master Child Index, to include all children in both the immunization and lead test registries. The principal challenge of this integration was to properly align records so that a child represented in one database is matched with the same child in the other database. To accomplish this task as well as to identify internal duplicate records within each database, an artificial intelligence record linkage system was created. The preliminary results show high rates of accurate merging of records both within and between the two databases. The 4,610,585 records contained in both databases before Master Child Index implementation consolidated into 2,977,290 records in the integrated system. The matching system eliminated 523,720 duplicate records within the two databases and matched and merged 1,109,575 records between the two databases. The Department of Health and Mental Hygiene plans to further develop the Master Child Index and use it as the department-wide, record-matching system.

Artificial Intelligence↗

PubMed1995

Genetic susceptibility for insulin-dependent diabetes mellitus in Caucasians revisited: the importance of diabetes registries in disclosing interactions between HLA-DQ- and insulin gene-linked risk. Belgian Diabetes Registry.

Whether genetic susceptibility for insulin-dependent diabetes mellitus (IDDM) at the 5' insulin gene polymorphic region (5' INS) interacts with human leukocyte antigen (HLA)-DQ-linked disease risk and whether it is associated with autoantibody formation is presently controversial. Diabetes registries allow more systematic reassessment of these questions. Two hundred and ninety-six Caucasian IDDM patients were recruited by the Belgian Diabetes Registry and sampled at disease onset, together with 195 ethnically matched control subjects. 5'INS genotypes were determined by Southern blotting, HLA-DQ by allele-specific oligotyping, and autoantibodies by validated immunoassays. The 5' INS 1/1 genotype was more prevalent in patients than in controls [relative risk (RR) = 2.3; P < 10(-4)]. Regardless of age at onset, the 5' INS 1/1 genotype occurred less frequently in patients with the high-risk genotype DQA1*0301-DQB1*0302/DQA1*0501-DQB1*0201 than in patients without it (P < 0.04). The RR associated with this high-risk HLA-DQ genotype (24.9; P < 10(-6)) was not affected by the presence or absence of the 5' INS 1/1 genotype. Combined positivity for the 5' INS 1/1 genotype and for one of three other HLA-DQ genotypes associated with an intermediate risk for IDDM conferred an age-independent RR of 12.1 (P < 10(-4)). In the absence of the 5' INS 1/1 genotype, intermediate-risk HLA-DQ genotypes no longer conferred a significant risk (2.9; not significantly different from 1). In subjects carrying neutral, protective, or infrequent HLA-DQ genotypes, the overall RR for IDDM was significantly lower than 1 (0.2; P < 10(-6)) in the absence of the 5' INS 1/1 genotype but not in its presence (0.8; not significantly different from 1). The 5' INS 1/1 genotype was not preferentially associated with immune markers for IDDM. In conclusion, regardless of age at onset and the presence of autoantibodies, 5' INS polymorphisms contribute preferentially to IDDM susceptibility in subjects without the highest HLA-DQ-associated risk.

Adolescent↗

PubMed1978

The Harvard Cooperative Stroke Registry: a prospective registry.

Data from 694 patients hospitalized with stroke were entered in a prospective, computer-based registry. Three hundred and sixty-four patients (53 percent) were diagnosed as having thrombosis, 215 (31 percent)as having cerebral embolism 70 (10 percent) as having intracerebral hematoma, and 45 (6 percent) as having subarachnoid hemorrhage from aneurysm or arteriovenous malformations. The 364 patients diagnosed as having thrombosis were divided into 233 (34 percent of all 694 patients) whose thrombosis was thought to involve a large artery and 131 (19 percent) with lacunar infarction. Many of the findings in this study were comparable to those in previous registries based on postmortem data. New observations include the high incidence of lacunes and cerebral emboli, the absence of an identifiable cardiac origin in 37 percent of all emboli, a nonsudden onset in 21 percent of emboli, and the occurrence of vomiting at onset in 51 percent and the absence of headache at onset in 67 percent of hematomas.

Cerebral Hemorrhage↗

PubMed1995

Clinicopathological features, survival and prognostic factors of primary central nervous system lymphomas: trends in incidence of primary central nervous system lymphomas and primary malignant brain tumors in a well-defined geographical area. Population-based data from the Danish Lymphoma Registry, LYFO, and the Danish Cancer Registry.

It has been claimed that Primary Central Nervous System Lymphomas (PCNSL), a rare neoplasm accounting for only a small fraction of malignant brain tumors and extranodal non-Hodgkin lymphomas (NHL), occur with increasing frequency in immunologically normal as well as in immunocompromised individuals. In an attempt to characterize the clinicopathological features, outcome and prognostic factors of PCNSL we here report our experience in a large unselected series of patients from a well-defined region. In addition, we present data on trends in incidence of PCNSL and primary malignant brain tumors in a well-defined geographical area. In a Danish population-based NHL registry (LYFO) representing a population of 2.7 million all new cases of NHL were registered during the approximate 11-year period from 1st January 1983 to 31st May 1994. Incidence data of primary malignant tumors of the brain and central nervous system in western Denmark for the period 1971-1990 have been obtained from the Danish Cancer Registry. During the approximate 11-year period 3124 new cases of NHL were registered. Of these, 1152 (37%) were extranodal and 48 were non-AIDS related PCNSL accounting for 4.2% of extranodal NHL and 1.5% of all NHL, respectively. The average annual incidence rate of non-AIDS related PCNSL during the period was 1.56 cases per million population (age range: 15-85 yrs, median: 62 yrs, M/F ratio: 1). In a 23-year period there was no trend towards an increasing incidence of non-AIDS related PCNSL in a well-defined population. PCNSL accounted for 1.7% of all primary malignant brain tumors. Incidence of primary malignant brain tumors was stable, except for age ranges over 70 years. However, diagnostic artifacts might be responsible for this apparent increase. Histologically, 85% were high grade. Using the Kiel classification centroblastic diffuse (60%) and immunoblastic lymphoma (13%) were the most common subtypes. Forty-three patients had B-cell lymphoma and no T-cell lymphoma was detected. Forty-seven cases were diagnosed pre mortem. Treatment included surgical resection (26 patients), whole brain irradiation (WBRT) (43 patients) and chemotherapy (28 patients). Median survival for those receiving either WBRT or WBRT and chemotherapy was 8 months and 20 months, respectively (p = 0.78). Overall survival was 53%, 38% and 26% at 1, 2 and 5 years. Cox-regression analysis identified only one factor having independent impact on survival in PCNSL: performances score > or = 2 (p < 0.001, RR = 5.8).

Adolescent↗

PubMed1999

[Health care registries a community asset. Centralized registries of health care data can save life and improve quality of life].

The article is a review of how national epidemiological data bases in Sweden can be used for research and statistical purposes. Over 500 major applications from research groups and others are dealt with annually by the National Cancer, Hospital discharge, Medical birth, and Cause-of-death registries, providing essential data for studies which have yielded well over a thousand peer-reviewed scientific papers. In over 40 years' Swedish experience of administering the registration of sensitive patient-specific information on diseases, there has not been a single case of data misuse. It is concluded that the benefits of national epidemiological registries far outweigh the risks and marginal costs of maintaining them.

Computer Security↗

PubMed2000

[International registry of liver tumors in liver transplantation. A registry update on hepatocellular carcinoma (HCC)].

In order to evaluate the impact of tumor characteristics on the outcome of survival following liver transplantation, a registry was established in 1992. The registry uses a mailout twice a year for initial reporting and for subsequent follow-up as the method of obtaining data. This report contains information from 644 patients from 57 institutions worldwide. Of those patients, 249 were alive and free of tumor, 27 patients were alive with tumor, 132 patients had died free of tumor and 139 patients had died with tumor. Of the deaths, half (135) were tumor related and 130 were non-tumor related. 97 patients' outcomes were not currently known. Factors influencing survival of HCC is the size of the tumor, multifocality, bilobar distribution, vascular invasion and tumor grade. In a Cox multivariate analysis tumor size of more than 5 cm, positive nodes and a poorly differentiated tumor were independent predictors of survival. The presence of an incidental tumor has a better prognosis than that of a non-incidental tumor; however, the difference is less than 10% at 5 years. Thus, an incidental hepatocellular carcinoma in a liver transplant patient should be treated as seriously and aggressively as a patient who was transplanted for the indication of a hepatocellular carcinoma.

Carcinoma, Hepatocellular↗