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PubMed2006

Are registry hospitals different? A comparison of patients admitted to hospitals of a commercial heart failure registry with those from national and community cohorts.

BACKGROUND: Clinical registries have been created to address questions that are difficult to answer with clinical trials. However, the applicability of registry findings to the general population has been questioned because of concerns over potential bias in the selection of participating hospitals. The purpose of this study was to determine if patients admitted to hospitals participating in a heart failure registry (ADHERE) are comparable with patients admitted to other hospitals, including those admitted to Framingham area hospitals. METHODS: We used a 20% random sample of all Medicare patients discharged during 1984 to 2001 to determine rates of hospitalization, procedure use, and survival after a first admission for heart failure (none in the prior 3 years). Hospitals were classified as participating in the ADHERE registry (n = 189), located within or near Framingham, MA (n = 9), or other (n = 5541). RESULTS: A total of 725,702 first admissions were identified, including 80,338 to ADHERE hospitals and 1716 to Framingham area hospitals. Minimal differences in patient characteristics were noted between patients admitted to ADHERE and non-ADHERE hospitals, although patients admitted to Framingham area hospitals were more likely to be white (95%) than were patients admitted to ADHERE (84%) or other hospitals (87%, P < .0001). Mortality at 1 year was 35.8% for ADHERE, 36.2% for other hospitalized patients, and 32.9% for Framingham patients (P < .0001). Rehospitalization for heart failure at 90 days was 13.0% for following admission to ADHERE, 13.0% to other hospitals, and 16.4% to Framingham hospitals (P = .0004). After adjustment for patient characteristics, differences in outcome between ADHERE and non-ADHERE hospitals remained minimal. CONCLUSION: Patients admitted with heart failure to ADHERE registry hospitals had similar baseline characteristics and outcomes to other patients.

Aged↗

PubMed2004

Application of dialysis and transplant registries to clinical practice: the Lombardy Registry.

BACKGROUND: Data collected from registries provide a useful source of information for clinical practice. Therefore, several regional and national registries of end-stage renal disease (ESRD) patients have been established. The Lombardy Registry of Dialysis and Transplantation (RLDT) was established in 1982, with participation of all 44 dialysis units that were present at that time within the region. METHODS: Demographic and clinical data on ESRD patients are collected yearly. We present here the results of some of the analyses that have been performed on RLDT data since it was started. RESULTS: Briefly, data on epidemiology of ESRD, cardiovascular disease, patterns of care and patients' outcomes have been considered. Comparisons with international registries have also been performed. CONCLUSIONS: This analysis shows how data collected from a homogeneous patient population receiving similar patterns of care provide precise information on that population. A clear example is provided by the similar results obtained in the comparison of high-flux vs low-flux membranes in a randomized control trial, the HEMO study, and in an analysis of RLDT data. Therefore, analysis of data collected by registries represents an important tool to improve clinical practice and possibly patients' outcomes.

Aged↗

PubMed2003

The Danish Registry for Plastic Surgery of the Breast: establishment of a nationwide registry for prospective follow-up, quality assessment, and investigation of breast surgery.

Although numerous epidemiologic studies have examined the long-term safety of silicone breast implants during the past decade, there is a relative lack of surveillance data on short-term health effects and complications following cosmetic surgery of the breast. The Danish Registry for Plastic Surgery of the Breast, established in May of 1999, provides plastic surgeons with a nationwide system for the collection of preoperative, perioperative, and postoperative data on women undergoing breast implantation, breast reduction, or mastopexy. The purpose of the Registry is to examine short-term and, eventually, long-term local complications and possible health effects, and to contribute to an ongoing evaluation of surgical results and surveillance of the products. Furthermore, the Registry will allow the identification of new areas for research into cosmetic and reconstructive breast surgery. Women accepting registration in the Danish Registry for Plastic Surgery of the Breast complete a self-administered questionnaire focusing on medical history and demographic and behavioral factors. Preoperative blood samples are drawn for storage. Surgical data, postoperative results, and complications are registered following surgery and at postoperative visits. Currently, registration has been initiated at 24 private and public clinics, representing more than 80 percent of the plastic surgery clinics in Denmark. As of November of 2001, a total of 1472 women with breast implants and 560 women with breast reduction were included in the Registry. These figures are expected to increase annually by 1000 women undergoing breast implantation and 500 women undergoing breast reduction or mastopexy. The authors present their experience of establishing the first nationwide comprehensive clinical-epidemiologic database and biological bank for cosmetic and reconstructive surgery procedures.

Breast Implants↗

PubMed2001

The Danish Cerebral Palsy Registry. A registry on a specific impairment.

Cerebral palsy (CP) is the commonest disabling impairment in childhood, with a prevalence of 2-3 per 1000 live births. The Danish Cerebral Palsy Registry is a research registry that contains cases of CP from birth year 1925 and has estimated the birth prevalence since 1950. Data on children with CP are collected from paediatric departments and one special institution for disabled children. The children are included by a child neurologist and an obstetrician, and information on pregnancy, birth, neonatal period, impairments and demographic data on the child and mother are registered in a standard form. The uptake area is eastern Denmark, covering about 50% of the population, but the rest of Denmark is planned to be included from 2001. The Registry is large, well established and validated, and the definitions and collection procedures have not changed through several decades. It therefore has great research potential. Birth prevalence is estimated continuously, and changes over time are analysed and correlated with pre- and perinatal conditions. A correlation between increased survival of preterm babies and an increased prevalence was found previously, and a decreased prevalence in very preterm infants was later associated with less use of mechanical ventilation. A study correlating CP and maternal infection is ongoing. Collaboration between 14 European CP registries allows the true differences in prevalence between different countries to be studied. Linkage to other individually based registries in Denmark will allow the social consequences of CP to be described.

Cerebral Palsy↗

PubMed2002

Pilot test for linking population-based cancer registries with CCG/POG pediatric registries.

An estimated 8,600 new cases of cancer are expected to be diagnosed in children aged 0-14 in the United States during 2001. Childhood cancer rates vary considerably by age with rates of 20.1 cases/100,000 for ages 0-4, 10.8 cases/100,000 for ages 5-9, 12.0 cases/100,000 for ages 10-14, and 19.6 cases/100,000 for ages 15-19. While the overall cancer mortality rate among children aged 0-14 declined by an average 2.9% per year during the time period 1975-1998, the overall incident rate, as measured by the National Cancer Institute's (NCI) Surveillance, Epidemiology, and End Results (SEER) Program, increased by an average 0.8% per year. Concern over the increasing incidence rate has led to increasing public demands for research on the causes of childhood cancer and for research on patterns of care among children and adolescents with cancer. Several groups have proposed that a national childhood cancer registry would enhance research opportunities. The NCI is proceeding to develop a National Network for Research on Cancer in Children which among other components would include merging databases of the NCI's Childhood Cancer Group (CCG) and the Pediatric Oncology Group (POG) to create a National Childhood Cancer Registry (NCCR). However, several studies have documented that the CCG and POG do not enroll all children with cancer in the US, and that they enroll even fewer adolescents. A recent tabulation of the California Cancer Registry (CCR) database for cases diagnosed in 1996 showed that 74.6% of childhood cancer cases among ages 0-14 were reported to the CCR by CCG/POG facilities but only 37.2% of cases among ages 15-19 were reported by those same facilities. Therefore, it is well recognized that the NCCR will need to collaborate with state and SEER population-based cancer registries in order to obtain complete case ascertainment. Similarly, the Centers for Disease Control and Prevention (CDC) National Program of Cancer Registries (NPCR) has been investigating methods for states to: (1) efficiently collect incident cancer case reports including childhood and adolescent cancers, (2) validate completeness of state case ascertainment, and (3) increase the research potential for NPCR-collected data.

Adolescent↗

PubMed1992

Acyclovir in pregnancy registry: six years' experience. The Acyclovir in Pregnancy Registry Advisory Committee.

The Acyclovir in Pregnancy Registry was established to gather data on prenatal exposure to acyclovir. Exposed pregnancies are tracked prospectively to ascertain exposure, risk factors, and pregnancy outcome. Through June 30, 1990, 312 acyclovir-exposed pregnancies had been reported and followed. Of these, 239 were exposed during the first trimester; outcomes included 24 spontaneous fetal losses, 47 induced abortions, 159 live births of infants without congenital abnormalities, and nine outcomes with congenital abnormalities. Among the 73 second- and third-trimester exposures, one infant was born with an abnormality. Exposures are also reported to the registry retrospectively, ie, after the outcome of pregnancy is known. Registry findings to date do not show an increase in the number of birth defects among the prospective reports when compared with that expected in the general population, and there is no consistent pattern of abnormalities among retrospective or prospective reports. These findings should provide some reassurance in counseling women following inadvertent prenatal exposure. The cases accumulated to date represent a sample of insufficient size for reaching reliable and definitive conclusions about the safety of acyclovir for pregnant women and their developing fetuses. Therefore, until further information is available, the Acyclovir in Pregnancy Registry Advisory Committee recommends following the 1989 Centers for Disease Control Sexually Transmitted Diseases Treatment Guidelines for the use of acyclovir in pregnancy, and encourages reporting of all prenatal exposures to the registry (1-800-722-9292, ext. 8465).

Acyclovir↗

PubMed1985

[Cancer registry of Calvados, hospital registry of the François- Baclesse Center and mortality statistics: comparisons].

Incidence rates of the cancer registry of the department of Calvados were compared, by site and by age group, with those obtained from the cancer registry of the comprehensive cancer center in Caen, concerning the population of the department of Calvados. In males, these rates are approximately similar for head and neck sites; for the hospital registry they are 50% of those recorded by the population registry for lung cancer, and 30% for prostatic cancer. In females, the all-sites rates are nearly identical for the youngest age groups and 50% for the older. They are not significantly different for digestive cancer, and 75% for cervix and breast cancer. The incidence rates of both registries were compared with mortality rates. They indicate mortality rates which appear relatively high for the pancreas, and they show imprecisions for the uterus and head and neck (pharynx-larynx) sites.

Adult↗

PubMed2005

Identification, diagnosis and treatment of heparin-induced thrombocytopenia and thrombosis: a registry of prolonged heparin use and thrombocytopenia among hospitalized patients with and without cardiovascular disease. The Complication After Thrombocytopenia Caused by Heparin (CATCH) Registry steering committee.

BACKGROUND: Heparin-induced thrombocytopenia (HIT) is estimated to occur in 1-5% of all patients receiving heparin, and 25-50% of such cases develop heparin-induced thrombocytopenia with thrombosis (HITT) A conservative estimate based only on cardiovascular patients suggests that in the United States approximately 100,000 patients develop thrombocytopenia, and 25-50,000 develop HITT annually. Both HIT and HITT are associated with high morbidity and mortality and represent substantial worldwide public health concerns. REGISTRY DESIGN: The objective of the Complication After Thrombocytopenia Caused by Heparin (CATCH) Registry is to identify the incidence of HIT and/or HITT in patients treated with systemic heparin (unfractionated or low molecular weight heparin) in contemporary practice. Additional objectives include to: (1) provide a comprehensive database of patients with suspected HIT or HITT, (2) monitor and define clinical events, including thrombocytopenia, thrombosis, and mortality among patients treated with prolonged (> 96 hours) heparin, (3) describe the incidence and outcomes of HIT and HITT in patients who are treated with heparin and who develop thrombocytopenia in the Coronary Care Unit setting, and (4) document and characterize current diagnostic and therapeutic strategies of suspected HIT. The unblinded registry will record approximately 5,000 patients at 60-80 US hospitals with either prolonged systemic heparin administration or thrombocytopenia and those with suspected HIT or HITT. Enrollment began in the first quarter 2003 and was completed at the end of 2004. IMPLICATIONS: The registry will provide valuable insights to the incidence and consequences of HIT and HITT that will enable improvements in diagnosis and treatment.

Cardiovascular Diseases↗

PubMed2003

Registry to referral: using birth defects registries to refer infants and toddlers for early intervention services.

BACKGROUND: Although many birth defect surveillance systems were developed for the primary purpose of monitoring trends and conducting epidemiologic studies, a number of programs have recognized the potential of birth defects monitoring systems for identifying and referring children who may be eligible for services. Because almost all surveillance programs maintain a registry of all children who have been diagnosed with birth defects in a particular state or other defined geographic region, registries can play an important role in identifying eligible children and providing timely referral to specialized services. METHODS: We sent electronically an 18-question survey to the Centers for Disease Control and Prevention's list of State Birth Defects Surveillance Contacts in all 50 states, the District of Columbia, and Puerto Rico. The survey queried states as to whether they had or were developing a birth defect surveillance program, the extent to which they were currently using or were considering using their program as a means of identifying and referring children for services, and if so, the manner in which referrals were made. RESULTS: We received completed surveys from all 50 states, Washington, DC, and Puerto Rico. Thirty-two of the fifty-two respondents stated that their state or entity has an operational birth defect surveillance program. Of these, 13 have implemented an identification and referral system within the surveillance program. All 16 states that were planning a surveillance program are also are planning or beginning to implement a program that would include an identification and referral system. Respondents cited lack of resources and confidentiality concerns as being the major barriers to implementing a referral system for their registry. CONCLUSIONS: For many registries, using their surveillance data for program development purposes represents a new undertaking. This trend reflects increasing recognition of the role that state-based birth defect surveillance systems can play in supporting child-find efforts for children with special needs. In the long run, this expanded focus may further enhance the public health usefulness of birth defect surveillance programs.

Child, Preschool↗

PubMed2003

Using disease registries for pharmacoepidemiological research: a case study of data from a cystic fibrosis registry.

BACKGROUND: The Epidemiologic Registry of Cystic Fibrosis (ERCF) was a multicentre, longitudinal follow-up project of cystic fibrosis patients enrolled at some 200 centres in nine European countries between 1994 and 1999. PURPOSE: We aimed to assess and improve the quality of a subset of data from the ERCF relating to seven English centres (1184 patients), prior to using the data for a long-term cost-effectiveness analysis of dornase alfa (Pulmozyme). Specifically we wanted to assess the completeness and accuracy of the data and the comparability of cases across centres. METHODS: We used a subset of ERCF data relating to seven UK cystic fibrosis (CF) centres. Following initial data editing, key variable data from a sample of patients from five centres were subjected to a detailed verification of ERCF data against original data sources available in the centres. Disagreements between ERCF reports and original data sources were identified and corrected in the study dataset. In addition, centre staff were questioned about relevant clinical and recording practices. RESULTS: Thanks to detailed routine data checking procedures on key variables operated by the ERCF, the rates of disagreement between ERCF data and original data as identified in our verification process on the assessed variables are generally low (0.4-3.7%). Some outcome variables (deaths, hospitalisations) seem to be under-reported by some centres. Episodes of pulmonary exacerbation are difficult to identify and also to verify. Twenty-four patients were registered twice (consecutively in two different centres). There were some differences between centres in their interpretation of recording rules. CONCLUSIONS: Researchers seeking to use disease registry data should consider detailed data quality review processes. Apart from data accuracy, reliable definitions of both critical events as well as their timing are important. The degree of under-reporting, particularly of outcome variables, should be estimated. Information on local clinical and reporting practices is necessary to interpret multi-centre data. Data protection issues may limit the possibilities for detailed data quality assessments of secondary data, as does the accessibility of original data for verification purposes. Our experiences and recommendations may be valuable for those intending to use disease registry data as well as those devising and operating such registries.

Adult↗

PubMed1993

1991 registry of the French Society of Hemapheresis (SFH): preliminary results for the first year of the on-line computer access file. The Registry Study Group.

From 1985 to 1990, the French Society of Hemapheresis (SFH) managed a National Registry of Plasma Exchange (PE) which included a data collection service, computer data input and statistical analysis of the total operation. The management of this registry did, however, encounter some problems. In 1991, an on-line computer access file was created, permitting French centers to input their data in Minitel Registry System. As a result, analysis on a national scale has proven more time-effective and data collection errors have been noticeably reduced. In January 1991, 43 centers were connected to the Minitel System. Only 17 centers, representing 4706 PEs, entered their data directly to the Minitel System during 1991 and, during the first term of 1992, a further 11 centers, representing 3258 PEs, communicated their data on paper in batch mode. The final total for 1990 was: 26 centers representing 860 patients and 7991 PEs. It is likely that some small imperfections have already developed during processing of the 1991 data, but these will be corrected as they are entered into the system. With the implementation of the Minitel System the French PE Registry represents a more accurate picture of plasmapheresis activity in France.

Evaluation Studies as Topic↗

PubMed1997

The Besançon Stroke Registry: an acute stroke registry of 2,500 consecutive patients.

The purpose of this study was to estimate the frequency of various risk factors, courses and outcome of stroke subtypes in a large hospital-based stroke registry. The Centre Hospitalier Universitaire of Besançon is the only public hospital with a neurological department in the county to admit any unselected patient with an acute stroke. A prospective hospital-based registry using systematic computer coding of data was conducted. All patients were evaluated by standard testing (neuroimaging, Doppler ultrasonography and cardiac investigations). From 1987 to 1994, 2,500 stroke patients with a first-ever stroke were included in the Besançon Stroke Registry. There were 1,425 men (mean age 66.1 years) and 1,075 women (mean age 70.6 years). Ischemic stroke was present in 84% of the patients (cerebral infarction in 84.5% and transient ischemic attacks in 15.5%), primary intracerebral hemorrhage (PIH) in 14.2% and cerebral venous thrombosis in 1.8%. On the 1st day of the stroke 79.9% of the patients were admitted, 47.1% within 6 h. In addition, stroke severity was well correlated with the time of the patient's admission. Past medical history of hypertension was the major risk factor occurring in 55.8% of all patients, followed by smoking, atrial fibrillation, ischemic heart disease, hypercholesterolemia and diabetes mellitus. Clinical presentation was distributed according to classical patterns. The in-hospital mortality rate was 13.6% and was higher in patients with infarcts (13.7%) or PIH (25.6%). Logistic regression analysis determined independent predictive factors for death: deterioration at 48 h [odds ratio (OR) 10.1, 95% confidence interval (CI) 7.0-14.5], initial loss of consciousness (OR 4.5, 95% CI 3.1-6.4), age > 70 (OR 2.6, 95% CI 1.8-3.8), complete motor deficit (OR 1.9, 95% CI 1.3-2.8), major cognitive syndrome (OR 1.5, 95% CI 1.1-2.3), hyperglycemia at admission (OR 1.007, 95% CI 1.004-1.01), female gender (OR 0.7, 95% CI 0.5-0.9) and regressive stroke onset (OR 0.2, 95% CI 0.1-0.5). The Besançon Stroke Registry is a useful tool for the study of the risk factors, clinical features, and the course of strokes in an early phase.

Acute Disease↗

PubMed1997

Baseline characteristics of enrollees in the National Heart, Lung and Blood Institute Registry of alpha 1-antitrypsin deficiency. Alpha 1-Antitrypsin Deficiency Registry Study Group.

OBJECTIVE: alpha 1-Antitrypsin (alpha 1-AT) deficiency is a hereditary disorder characterized by a high risk for the development of emphysema at an early age. In 1988, the National Heart, Lung and Blood Institute, National Institutes of Health, initiated a registry of individuals with alpha 1-AT deficiency to help define the natural history and clinical course of this disorder. This article describes demographic and clinical characteristics of subjects enrolled in the Registry at baseline. DESIGN: Prospective longitudinal natural history study. SETTING: Thirty-seven clinical centers in the United States (36 centers) and Canada (one center). PATIENTS: There were 1,129 subjects 18 years of age or older with severe deficiency of alpha 1-AT, defined as having serum alpha 1-AT levels < or = 11 mumol/L confirmed by a Central Phenotyping Laboratory, or a ZZ or ZNull genotype identified by genomic DNA analysis. RESULTS: Most enrollees were symptomatic white subjects in their fourth to sixth decade, with a ZZ phenotype, a history of having smoked cigarettes, and pulmonary function tests demonstrating a pattern consistent with emphysema. Interestingly, only a small percentage were current smokers on enrollment, suggesting that this population is amenable to smoking cessation. A subgroup of individuals in the Registry with relatively normal lung function were younger, more likely to have never smoked and more likely to have come to medical attention owing to a family history of alpha 1-AT deficiency rather than symptomatic involvement. CONCLUSIONS: These results emphasize the need for increased awareness and early detection of alpha 1-AT deficiency. In this endeavor, dissemination of the information contained in the Registry to health-care professionals and the general population, along with initiation of appropriate preventative measures before significant lung damage has occurred, could have considerable benefits for individuals with this condition.

Adult↗

PubMed2005

Polish Registry of Congenital Malformations - aims and organization of the registry monitoring 300 000 births a year.

In 1997, the Polish Registry of Congenital Malformations (PRCM) was established, to fulfil epidemiological, prophylactic, socioeconomic and scientific functions. The PRCM is a population-based registry monitoring currently about 300 000 births a year in 13 provinces. Such a large area and population require a special organizational structure of the Registry. The PRCM Central Working Group and the computer database are located in the Department of Medical Genetics, University of Medical Sciences, Poznań. Here the data are collected, validated, encoded according to the ICD-10, and analysed. Provincial Working Groups are responsible for supervision of data collection in the given province. The PRCM staff has grown from about 250 members in 1997 to more than 400 members today. The PRCM collects information on structural defects diagnosed before the end of the second year of life. Minor anomalies are excluded from the registry. The main source of information is a registration form filled up by the physician diagnosing the anomaly. Since 2004 also electronic reporting has been possible. On 28 September 2005 there were 54 020 entries in the database concerning 33 729 children with at least one congenital malformation and 1261 control entries concerning children without malformations. The PRCM is also an important source of identification of families at genetic risk. Education of physicians and the community in the field of genetic counselling is also an important aim of the PRCM. Since 2001, the PRCM has been a member of the Eurocat. Detailed information on PRCM organization, electronic reporting, and results are available at the PRCM website (www.rejestrwad.pl).

Congenital Abnormalities↗

PubMed1990

Pancreas transplantation: report on United States results from United Network for Organ Sharing Registry with comparison to non-United States results from the International Registry.

From December 17, 1966 to December 31, 1990, 3,069 pancreas transplants worldwide (1,806 United States and 1,263 non-United States) were reported to the International Pancreas Transplant Registry, including 606 in 1990. The 2,871 pancreas transplants in the Registry data base as of October 31, 1990 were analyzed. Results worldwide improved in each of 5 successive eras. The recipient and pancreas graft functional survival rates at 1 year for all 1988 to 1990 cases (n = 1,415) were 91% and 68%, respectively. The effect of multiple variables on outcome was determined by analyzing the 2,037 cases in the International Registry data base since 1985. Worldwide, BD (n = 1,566) was used more frequently than DI (n = 327) or ED (n = 174) and was associated with a significantly higher (p less than 0.001) graft functional survival rate, at 1 year 65% versus 56% and 53%, respectively. Worldwide, SPK transplants (n = 1,644) were performed much more frequently than either PAK (n = 223), or PTA (n = 212). The pancreas graft functional survival rate was significantly higher (p less than 0.001) in the SPK than in the other 2 categories, at 1 year being 68% versus 45% and 37%, respectively. The kidney graft survival rate for all SPK cases at 1 year was 80%. Worldwide, a significant effect of HLA-DR matching was seen only in analysis of PTA, graft survival at 1 year being 54% in PTA recipients matched for 2 DR antigens (n = 13), 44% for 1 DR antigen (n = 63) and 29% for 0 DR antigens (n = 97) (p = 0,015 for 2 vs 0 DR). Worldwide, more than half of the pancreas grafts were preserved in UW solution (n = 1,111), and an increasing preservation length was not associated with a significant decrease in functional survival rates, at 1 year being 67%, 73%, 71%, and 60% for those stored less than 12 (n = 563), 12-24 (n = 416), 24-30 (n = 30), and greater than 30 (n = 5) hours. A separate analysis was performed on pancreas transplants in the United States reported to the UNOS Registry from its inception on October 1, 1987 to October 21, 1990 (n = 1,021). Almost all pancreas transplants in the United States during this period were by the BD technique (92%). The overall patient and pancreas graft survival rates were 92% and 72% at 1 year.(ABSTRACT TRUNCATED AT 400 WORDS)

Follow-Up Studies↗

PubMed2006

International experience in stroke registries: lessons learned in establishing the Registry of the Canadian Stroke Network.

This paper discusses the early lessons learned in establishing the Registry of the Canadian Stroke Network (RCSN), particularly the pitfalls related to the requirement for informed patient (or surrogate) consent for inclusion in the registry. The need for stroke registries to collect accurate data that are representative of all patients with acute stroke in a given community is emphasized, and how the current methodology strives to reach this goal is outlined.

Acute Disease↗

PubMed1999

Smoking during pregnancy and Poland sequence: results of a population-based registry and a case-control registry.

As Poland sequence (PS) could have a vascular disruptive origin, here we analyzed the possible relationship between maternal smoking during pregnancy and PS, using data from two registries with different methodologies: the Hungarian Congenital Abnormality Registry (HCAR), which is a population-based registry, and the Spanish Collaborative Study of Congenital Malformations (ECEMC), which is a hospital-based and case-control study. The results presented here in a multivariate analysis, although based on a small sample size, suggest that maternal smoking during pregnancy may increase the risk for PS by about 2-fold. This result was similar in the two studied programs with different methodologies and different uncontrolled confounding factors. However, as this is the first time that PS has been associated with maternal smoking during pregnancy, further analyses are needed to confirm our findings.

Case-Control Studies↗

PubMed1998

[Epidemiology of severe eye injuries. United States Eye Injury Registry (USEIR) and Hungarian Eye Injury Registry (HEIR)].

BACKGROUND: Both in industrialized and in developing nations, the devastating impact of ocular trauma on society is increasingly recognized. Lacking standardized surveillance systems, however, comparable epidemiological information has not been available previously. METHODS: For several years, the United States Eye Injury Registry (USEIR) and the Hungarian Eye Injury Registry (HEIR) have been collecting data on all types of serious ocular trauma, based on identical operating criteria and using standardized reporting forms. We performed a retrospective analysis comparing the two datasets, containing over 8,400 injuries from the U.S. and over 1,200 injuries from Hungary. RESULTS: Sixty percent of patients in the U.S. and 52% of patients in Hungary were less than 30 years of age, with an at least 80% male preponderance in both registries. The home was the most frequent place of injury in both countries (USEIR: 41%, HEIR: 35%); industrial premises represented no more than 14%. Guns were responsible for 12% of cases in the USEIR (HEIR, 1%). Champagne corks were identified as a unique and relatively common source of eye injury in Hungary (1.4%, as opposed to 0.07% in the U.S.). In the USEIR, 16% of injuries were caused by assault (HEIR, 24%; chi-square value = 36.7, p < 0.0000001). The enucleation rate was 12% in the U.S. and 1% in Hungary. CONCLUSIONS: The different findings in the two countries identify certain areas for the implementation of preventive measures (supplying champagne bottles with warning labels and a coordinated fight against violence in Hungary, stricter fireworks legislation in the U.S., public awareness for home injuries in both countries, etc.). Based on the encouraging results from this study, we plan to continue our efforts using modified reporting forms and an upgraded software. We invite additional countries to adopt the USEIR model.

Adolescent↗