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Alpha-1 Foundation Research Registry PubMed articles on BioPortfolio. Our PubMed references draw on over 21 million records from the medical literature. Here you can see the latest Alpha-1 Foundation Research Registry articles that have been published worldwide.
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A major challenge in clinical research today is the difficulty that studies have in meeting recruitment goals. Up to 48% of studies do not meet accrual goals within the specified timeframe, significantly delaying the progress of projects and the dissemination of findings. This pervasive problem is a recruitment crisis. We developed a representative, ethnically and racially diverse research participant registry in a predominantly rural state with high levels of health care disparities and minority population...
Disparities persist in breast cancer outcomes between Latina survivors and non-Hispanic Whites. Identifying methods to ensure that Latinas participate in and benefit from translational behavioral medicine research is important to reduce disparities. We developed a "Social Network Research Registry" to enhance Latina survivors' engagement in research and explored the social networks and research/cancer organization participation in this population. We initially recruited 30 Latina breast cancer survivors ("s...
The Australian Cystic Fibrosis Data Registry is positioning itself as an exemplar of a rare disease registry for the future. While it continues to inform cystic fibrosis (CF) clinicians of patterns of CF disease and quality of care, its capability is increasing as a resource for further research into CF subpopulations, as a platform for clinical trials, and as an interface for patient experiences.
The Declaration of Helsinki has called for the registration of all research studies involving human participants. Despite this, prior registries did not allow registration certain study types, or retrospective registration. The Research Registry® (www.researchregistry.com) was established in 2015 to provide a venue of registration for any study involving human participants.
Early childhood is a period of tremendous growth in both language ability and brain maturation. To understand the dynamic interplay between neural activity and spoken language development, we used resting-state EEG recordings to explore the relation between alpha oscillations (7-10 Hz) and oral language ability in 4- to 6-year-old children with typical development (N = 41). Three properties of alpha oscillations were investigated: a) alpha power using spectral analysis, b) flexibility of the alpha fre...
The CathPCI Registry was started in 1998 to improve health quality for those patients having a percutaneous coronary intervention or diagnostic cardiac catheterization. This registry studies complications, outcomes from placing coronary artery stents of different types, appropriateness of performing the procedures, special indications for performing the procedures, safety of devices, patient characteristics, possible relationships between volume of procedures and quality, models to adjust for patient risk, ...
Ursula Ward, Chief Executive, Florence Nightingale Foundation, firstname.lastname@example.org , describes the role of the foundation and its plans for the future.
B:C:DRB1:DQB1 allele and haplotype frequencies were determined among India, Andhra Pradesh, Telugu speaking population from South India by Next Generation Sequencing. 180 bone marrow registry donors and 6 cord blood units from Jeevan Stem Cell Foundation (part of Be The Cure Registry), Chennai, Tamilnadu state were included in the study.
Direct quantitative assessment of health risks following exposure to ionizing radiation is based on findings from epidemiological studies. Populations affected by nuclear bomb testing are among those that allow such assessment. The population living around the former Soviet Union's Semipalatinsk nuclear test site is one of the largest human cohorts exposed to radiation from nuclear weapons tests. Following research that started in the 1960s, a registry that contains information on more than 300,000 individu...
Frontal alpha EEG asymmetry, an indirect marker of asymmetries in relative frontal brain activity, are widely used in research on lateralization of emotional processing. While most authors focus on frontal electrode pairs (e.g., F3/F4 or F7/F8), several recent studies have indicated that EEG asymmetries can also be observed outside the frontal lobe and in frequency bands other than alpha. Because the focus of most EEG asymmetry research is on the correlations between asymmetry and other traits, much less is...
The alpha-gal syndrome is characterized by the presence of sIgE antibodies to alpha-gal and delayed type I allergic reaction to the carbohydrate galactose-alpha-1,3-galactose (alpha-gal) after consumption of mammalian (red) meat products and drugs of a mammalian origin. Diagnostics currently rely on patient history, skin tests, determination of sIgE antibodies, oral food or drug challenges.
We collected 'real-life' data on the management of patients with mastocytosis in the Italian Mastocytosis Registry.
Aminochrome induces neurotoxic alpha-synuclein oligomer formation relevant to the etiology of Parkinson's disease. Oxidative stress produces aminochrome from dopamine, but conjugation with glutathione catalyzed by glutathione transferase M2-2 significantly decreases aminochrome-induced toxicity and alpha-synuclein oligomer formation. Notably, in the presence of the aminochrome-glutathione conjugate, previously unknown species of alpha-synuclein oligomers are formed. These aminochrome-glutathione oligomers o...
Genomic information will increasingly be used to aid in the prevention, diagnosis, and treatment of disease. Several national initiatives are paving the way for this new reality, while also promoting new models of participant-engaged research. We compare the opinions of research participants in a cancer registry, human genetic researchers, and institutional review board (IRB) professionals about the return of individual-level genetic results (ROR).
Our aim was to assess whether a novel approach of digitally facilitated, citizen-science research, as followed by the Swiss Multiple Sclerosis Registry (Swiss MS Registry), leads to accelerated participant recruitment and more diverse study populations compared with traditional research studies where participants are mostly recruited in study centres without the use of digital technology.
Shallow foundation is a common foundation type that is usually used for small to medium size structures. The bearing ability and the failure mechanism of shallow foundation are the fundamental concerns for geotechnical engineers, and the demand for new insights into the relevant issue is still increasing. This paper presents an acoustic emission (AE) characterization of the failure process of shallow foundation, with the aim of revealing the fundamental information on AE signals associated with shallow foun...
The American Orthopaedic Association initiated the Own the Bone (OTB) quality improvement program in 2009. Herein we show that the data collected through this program is similar to that collected in other large studies. Thus, the OTB registry functions as an externally valid cohort for studying fragility fracture patients.
Alpha oscillations generated in the human brain have long been investigated in neuroscience. Synchronized oscillatory activities of numerous neural oscillators are thought to underlie alpha oscillations. The amplitude of alpha oscillations reflects the degree of synchronization, which is often modulated through alpha activation and inactivation, for example, in event-related synchronization and desynchronization. The range of synchronization can be estimated using the similarity between neighboring alpha os...
Currently there are many uncertainties in the optimal treatment of malignant pleural mesothelioma (MPM), this is reflected in discrepancies between current guidelines. Our aim was to evaluate the current status of prospective interventional clinical trials within the ClinicalTrials.gov registry in MPM in order to predict a potential impact on MPM management in the next years.
Electronic health record (EHR) systems contain large volumes of novel heterogeneous data that can be linked to trauma registry data to enable innovative research not possible with either data source alone.
The aim of the Nanoluté registry was to observe the clinical performance of a novel sirolimus coated balloon (SCB) (Concept Medical Research Private Limited, India) for the treatment of coronary de-novo and restenotic lesions.
The Indian HIPEC registry is a self-funded registry instituted by a group of Indian surgeons for patients with peritoneal metastases (PM) undergoing surgical treatment. This work was performed to • Evaluate outcomes of cytoreductive surgery ± HIPEC in patients enrolled in the registry. • Identify operational problems.
Arthrogryposis multiplex congenita (AMC) describes a heterogeneous group of conditions with multiple congenital contractures. These conditions may be attributed to genetic or other factors inducing decreased fetal movements, including maternal and paternal factors. Discovering the underlying genetic pathways has important repercussions for prevention, gene therapy and genetic counselling. The current literature mainly consists of small-scale, single-site studies, limiting comparability and pooling of findin...
Since the onset of pediatric catheter ablation, the pediatric electrophysiology community has reported outcomes via various registries (PAPCA and the Pediatric Catheter Ablation registry (PCAR)). Most recently, a modern era pediatric and congenital ablation registry (MAP-IT) was developed for eventual incorporation into the NCDR IMPACT registry.
Ticagrelor and prasugrel are recommended as first line therapy in patients with acute coronary syndromes (ACS). However, patients with anemia are commonly treated with clopidogrel in routine clinical practice. The RENAMI registry (REgistry of New Antiplatelet therapy in patients with acute Myocardial Infarction) included ACS patients treated with prasugrel or ticagrelor at hospital discharge. The aim of this study was to analyze the prevalence of anemia and characteristics and outcomes of these patients acc...