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At least 19 recordsLinked to original sources
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↗
PubMed1975

The 12th Report of the Human Renal Transplant Registry. Prepared by the Advisory Committee to the Renal Transplant Registry.

This report, the 12th, from the Renal Transplant Registry summarizes current results of kidney transplantation in man. There has been a trend toward increasing use of cadaveric sources for kidney transplantation. Results are summarized in five-year life-table analyses of recipient survival and graft function. Also, a summary of the results of special studies is provided. These include preparation of the recipient for transplantation by nephrectomy in various disease states, comparison of simple flushing with machine perfusion in cadaveric kidney storage, results of transplantation in the pediatric recipient, and the development of malignant neoplasm in graft recipients. A large study relating typing to graft function presents information at some variance from previous reports published in the United States.

Adolescent↗
PubMed1977

Role of the cancer registry.

The cancer registry can be defined as a facility for the collection, storage, analysis, and interpretation of data on persons with cancer. The possible range of registry activities was discussed in relation to the population-based cancer registry. These activities included service to the medical profession and hence the cancer patient, the provision of information for planning control measures, the evaluation of treatment and of screening programs, the conduct of epidemiologic studies, either directly or indirectly, and the education of the public and the medical profession. The resources of the cancer registry can be used in follow-up for industrial and other cohorts exposed to a variety of agents. Registries must be prepared to meet the problem of confidentiality that might arise when information in the registry is linked with other data sets. The value of a cancer registry increases when it becomes possible to examine and assess time trends. Unfortunately, many cancer registries were not adequately funded or staffed to exploit usefully the data already collected at considerable expenses. The three types of staff required to ensure full utilization were discussed.

Economics, Medical↗
PubMed1978

Odontological section of a bone tumour registry.

A Bone Tumour Registry is incomplete without the inclusion of the odontogenic tumours. The odontogenic tumours originate in only three bones of the body so there is a case for the establishment of a separate section in a Bone Tumour Registry for their consideration. Problems of classification and differential diagnosis are different from other bone tumours. The clinicians and diagnostic specialists concerned with their recognition and treatment often only work in the oral field. They need the association with their colleagues working in the general bone tumour field which a Bone Tumour Registry can provide. In an area with a small population, the variety and number of cases seen will be small; establishment of a Bone Tumour Registry is a useful educational tool. The setting up of a Bone Tumour Registry at an early stage of the development of an area means that the lines of communication and collection of cases for the Registry can be more easily organized than in more populated areas. The Bone Tumour Registry in Perth and the setting up of its odontological section are described in this paper.

Australia↗
PubMed2026

International study of coronary microvascular angina (iCorMicA): A registry-based diagnostic study and nested randomized trial.

BACKGROUND: Angina is a debilitating condition caused by coronary artery disease and microvascular dysfunction. Following coronary angiography angina and no obstructive coronary arteries is a common outcome, and women are disproportionately affected. The objectives are first, to assess causes of angina in patients undergoing invasive management; and second, to assess effects of coronary function test-guided management on clinical outcomes. METHODS: This is an international, multicenter, prospective, registry-based study and nested, randomized, controlled, triple-blind, and endpoint trial. Participants, community care providers, and outcomes assessors are masked. Consented participants enter the registry. Participants without obstructive coronary artery disease (luminal stenosis <50%, or fractional flow reserve >0.80) are eligible for randomization. Index of microcirculatory resistance (IMR; abnormal &#x2265;25) and coronary flow reserve (CFR; abnormal <2.0; gray zone 2.0-2.5) are measured by bolus thermodilution, and results are disclosed (intervention) or not (control group) to the attending cardiologist. RESULTS: The primary outcome of the registry is the Seattle Angina Questionnaire summary score at baseline described by coronary artery disease status. Secondary outcomes include the prevalence of obstructive coronary artery disease, patient reported outcome measures and clinical outcomes. The primary outcome of the randomized trial is the within-individual change in Seattle Angina Questionnaire summary score at 12-months from baseline. Secondary outcomes include safety, diagnostic accuracy, patient reported outcome measures for quality of life, physical and psychological function, cardiovascular risk, clinical outcomes, health economics and mechanistic biomarkers. The first patient was screened on December 18, 2020 and the last patient was enrolled on June 30, 2026. Forty sites were included in the United Kingdom (n = 35), Republic of Ireland (n = 2), Holland (n = 2), and Poland (n = 1). In total, 1,483 participants were enrolled into the registry of whom 1,047 were randomized and 386 were not randomized (registry-only). CONCLUSION: This international, registry-based clinical trial will provide novel evidence on the natural history of angina and stratified therapy for angina with no obstructive coronary arteries. CLINICAL TRIAL REGISTRATION: https://clinicaltrials.gov/study/NCT04674449. UNIQUE IDENTIFIER: NCT04674449.

Humans↗
PubMed2025

Establishing a national pediatric stem cell transplantation registry in Iran addressing implementation and data quality challenges.

The Iranian Pediatric Hematopoietic Stem Cell Transplantation Registry (IPED-HSCT) was established to enhance data collection, improve patient outcomes, and support clinical research in pediatric hematopoietic stem cell transplantation. This study aimed to assess the feasibility and reliability of implementing a standardized registry in pediatric settings. A community-based participatory study was conducted across three pediatric HSCT centers in Iran. The registry development involved a multi-phase approach, including pilot testing and the implementation of a web-based system. Data were collected from fifty pediatric patients who underwent HSCT for both malignant and non-malignant conditions, with a focus on data completeness and user satisfaction. Statistical analyses were performed using IBM SPSS Statistics. The registry achieved a data completeness rate exceeding 90%, with a participant demographic of 31 males (62%) and 19 females (38%). Rigorous quality control measures and real-time validation rules were implemented, enhancing data reliability. User feedback indicated high satisfaction with the platform's design and training sessions. Challenges included variations in long-term follow-up data collection across centers. The IPED-HSCT Registry demonstrates that establishing a robust pediatric HSCT registry is feasible even in resource-limited settings. Its innovative features offer a scalable model for similar initiatives in developing countries. Future research should focus on ensuring long-term sustainability and fostering international collaborations to improve pediatric HSCT outcomes globally. not applicable.

Humans↗
PubMed1977

Cancer registries in Australia.

Cancer registries are at an early stage of development in Australia. Population-based registries are located in New South Wales Registry and Western Australia, and of these, only the New South Wales Registry is fully functioning. A hospital-based registry is maintained in Victoria. We have a national cancer registry in principle but it will not be functional for many years. Preliminary statistics for New South Wales indicate a cancer pattern similar to Caucasian populations. Some epidemiologic surveys have been undertaken.

Australia↗
PubMed1979

A cancer registry for the community radiation center.

A common problem for cancer treatment centers is maintenance and utilization of the cancer registry. Computerization of the large amount of patient information involved is desirable. Organization and implementation of a patient registry using a PC-12 treatment planning computer is described. This application is reasonable and effective for community radiation centers, and retains the interactive features that make these dedicated mini-computers so useful. Details of organizing and running this type of registry are included. Examples of the patient data from a radiation therapy department are given and the possibilities for analysis of the information discussed. An important part of the registry is the one-line summary of individual cases, termed the "patient status graph," that condenses patient follow-up history for quick review. The importance of a pertinent and practical registry for all cancer centers is discussed.

Cancer Care Facilities↗
PubMed1979

Current status of cancer registries in Australia.

Since 1975, considerable progress has been made in the development of population-based cancer registries in Australia. Each of the six federated states has accepted the principle that population registries are of major importance in cancer control. The registries in New South Wales (established in 1972) and South Australia (established 1977) are fully functional; in addition, a national pediatric registry was established in 1977. Cancer incidence data by site are available for the New South Wales registry, and a preliminary analysis has been done of melanoma for variation by geography and country of birth, and of lung and colorectal cancers for variations by country of birth. A 3-year study of cancer of the renal pelvis in New South Wales and the relationship to analgesic consumption was started in 1977; a second study on contacts among patients with hematologic cancers has been completed.

Australia↗
PubMed1979

Experience with a simplified trauma registry: profile of trauma at a university hospital.

A simplified computer-based trauma registry system with well-defined limits of data capture is presented. This registry was utilized to describe the profile of trauma at a university hospital. In 1 year there were 882 trauma victims hospitalized, with an overall mortality of 3.3%. The majority of the patients had relatively minor injuries, primarily involving soft tissue and bone. Severe multiple trauma was associated with a significant mortality. Intracranial or intra-abdominal injuries occurred in less than 10% of the patients. Transport accidents, falls, and assaults were the cause of injury in 70%. Key access to specific information about the trauma patient population demonstrated the potential of the registry system. The advantages and limitations of the registry are discussed.

Adolescent↗
PubMed1975

A computerized tumor-registry system for persons who do not love computers.

A new simplified system for updating a cancer registry has been developed in the Biostatistics Department of Roswell Park Memorial Institute. It was designed to serve the needs of maintaining a registry for a cooperative cancer research group. The Data-Update Procedure at a Remote Terminal (DUPART) system has general value for registry applications.

Computers↗
PubMed1978

The regional registry of gastro-intestinal cancer North Baden (2.2 million inhabitants).

The advantages of a population-based registry are discussed. It is shown that a registry for gastro-intestinal cancer in a district with expert medical care based upon histo-pathological diagnosis, has the principal advantage that it limits the sites of material collection to a few effective contributors, thus providing highly accurate data. The disadvantage of collecting data by two separate steps should be tolerated. The geographic situation and the organization of the regional registry for gastro-intestinal cancer in North Baden are described and the incidences for these cancers for the years 1971-1975 are given for the population of 2.2 million.

Gastrointestinal Neoplasms↗
PubMed2026

Stratified medicine with eplerenone for myocardial infarction or injury and no obstructive coronary arteries: A registry-based basket trial.

BACKGROUND: Myocardial Infarction with No Obstructive Coronary Arteries (MINOCA) or Nonischemic Myocardial Injury affects approximately 1 in 9 patients presenting with acute coronary syndrome, yet evidence-based therapies are lacking. Coronary microvascular dysfunction is implicated in the pathogenesis of suspected MINOCA, but its prevalence, prognostic implications and treatment are uncertain. The objectives are, first, to assess the prevalence of coronary microvascular dysfunction in patients with suspected MINOCA and, second, to implement endotype-informed stratified medicine involving patients with coronary microvascular dysfunction to treatment with eplerenone, a cardio- and vasculo-protective mineralocorticoid receptor antagonist. METHODS: This is a prospective, registry-based, multicenter, diagnostic study and nested, randomized, controlled, open-label, blinded-endpoint (PROBE) basket trial. Up to 400 patients with clinically suspected MINOCA and one or more cardiovascular risk factors will be enrolled into a registry-based diagnostic study. Coronary microvascular function will be assessed during invasive angiography using thermodilution. Patients with an index of coronary microvascular resistance (IMR) &#x2265; 25 will be randomized 1:1 to eplerenone (25-50 mg daily for 6 months) or standard care without eplerenone (control group) (n = 150 randomized). Final endotypes will be centrally adjudicated by a panel of blinded cardiologists. The primary outcome of the diagnostic study is the proportion of patients with IMR &#x2265; 25 during index coronary angiography. Secondary outcomes include coronary flow reserve, cardiovascular MRI parameters, patient-reported outcome measures, biomarkers of myocardial fibrosis and vascular inflammation, health outcomes and health economic assessments. The primary outcome of the randomized trial is the within-individual change in NT-proBNP at baseline, 1 month, and 6 months, based on intention-to-treat. Secondary outcomes include mechanistic blood biomarkers and patient-reported outcome measures. VALUE: This registry-based randomized trial will provide novel evidence on endotype-informed secondary prevention therapy with eplerenone for suspected MINOCA.

Humans↗
PubMed1979

Rheumatic fever in Minnesota. II. Evaluation of hospitalized patients and utilization of a State Rheumatic Fever Registry.

We studied the hospital records of 124 patients with a discharge diagnosis of acute rheumatic fever who were hospitalized in 21 Minneapolis-St. Paul hospitals during 1975 and 1976. After careful review of the hospital records, we found that 83 (67 per cent) of these patients did not have an acute illness. Seventeen (41 per cent) of the 41 cases with an acute illness were thought to adequately fulfill the Jones' Criteria for acute rheumatic fever. Upon review of the rheumatic fever registry of the Minnesota State Health Department, we found that less than one-half of the hospitalized patients had been reported to the registry. Cases that fulfilled and did not fulfill the Jones' Criteria were reported with equal frequency, indicating significant underreporting and overreporting of rheumatic fever. Evaluation of secondary rheumatic fever prophylaxis, both in those patients with acute rheumatic fever as well as in those with rheumatic heart disease, indicated that many patients who, in theory, should be receiving prophylaxis were not receiving it. These studies indicate a need for more thorough evaluation of the current epidemiology of rheumatic fever and the role of a rheumatic fever registry, and imply a need for reevaluation of these programs. (Am J Public Health 69:767-771, 1979).

Acute Disease↗