Find research datasets worth reusing
Search datasets from major research repositories and use ShareScore to quickly assess how well each record supports discovery, access, and reuse.
1,336
datasets available to search
ShareScore release 0.9.0
Dataset results
1,336 results for “congenital”
Characterization of N6-Methyladenosine lncRNAs in sporadic congenital cataract and age-related cataract
GEO Series GSE221970. Homo sapiens. 6 samples. Type: Expression profiling by high throughput sequencing; Other.
Data set from Flocco SF, Dellafiore F, Caruso R, Giamberti A, Micheletti A, Negura DG, Piazza L, Carminati M, Chessa M. Improving health perception through a transition care model for adolescents with congenital heart disease. J Cardiovasc Med (Hagerstown). 2019 Apr;20(4):253-260. doi: 10.2459/JCM.0000000000000770. PMID: 30676496.
<p>Data set from Flocco SF, Dellafiore F, Caruso R, Giamberti A, Micheletti A, Negura DG, Piazza L, Carminati M, Chessa M. Improving health perception through a transition care model for adolescents with congenital heart disease. J Cardiovasc Med (Hagerstown). 2019 Apr;20(4):253-260. doi: 10.2459/JCM.0000000000000770. PMID: 30676496.</p> <p> </p> <p>this is the abstract:</p> <p><strong>Aims: </strong>The aim of this study was to assess the impact of a transition clinic model on adolescent congenital heart disease (CHD) patients' health perception outcomes. The transition clinic model consists of multidisciplinary standardized interventions to educate and support CHD patients and represents a key element in the adequate delivery of care to these individuals during their transition from childhood to adulthood. Currently, empirical data regarding the impact of transition clinic models on the improvement of health perceptions in CHD adolescent patients are lacking.</p> <p><strong>Methods: </strong>A quasi-experimental design was employed. Quality of life, satisfaction, health perceptions and knowledge were assessed at the time of enrolment (T0) and a year after enrolment (T1), respectively. During the follow-up period, the patients enrolled (aged 11-18 years) were involved in the CHD-specific transition clinic model (CHD-TC).</p> <p><strong>Results: </strong>A sample of 224 CHD adolescents was enrolled (60.7% boys; mean age: 14.84 ± 1.78 years). According to Warnes' classification, 22% of patients had simple heart defect, 56% showed moderate complexity and 22% demonstrated severe complexity. The overall results suggested a good impact of the CHD-TC on adolescents' outcomes, detailing in T1 the occurrence of a reduction of pain (P < 0.001) and anxiety (P < 0.001) and an improvement of knowledge (P < 0.001), life satisfaction (P < 0.001), perception of health status (P < 0.001) and quality of life (P < 0.001).</p> <p><strong>Conclusion: </strong>The CHD-TC seems to provide high-quality care to the patient by way of a multidisciplinary team. The results of the present study are encouraging and confirm the need to create multidisciplinary standardized interventions in order to educate and support the delivery of care for CHD adolescents and their families.</p>
Data set from Moons P, Luyckx K, Kovacs AH, Holbein CE, Thomet C, Budts W, Enomoto J, Sluman MA, Yang HL, Jackson JL, Khairy P, Cook SC, Chidambarathanu S, Alday L, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Veldtman G, Soufi A, Fernandes SM, White K, Callus E, Kutty S, Apers S; APPROACH-IS Consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Prevalence and Effects of Cigarette Smoking, Cannabis Consumption, and Co-use in Adults From 15 Countries With Congenital Heart Disease. Can J Cardiol. 2019 Dec;35(12):1842-1850. doi: 10.1016/j.cjca.2019.07.635. Epub 2019 Aug 14. PMID: 31813510.
<p>Data set from Moons P, Luyckx K, Kovacs AH, Holbein CE, Thomet C, Budts W, Enomoto J, Sluman MA, Yang HL, Jackson JL, Khairy P, Cook SC, Chidambarathanu S, Alday L, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Veldtman G, Soufi A, Fernandes SM, White K, Callus E, Kutty S, Apers S; APPROACH-IS Consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Prevalence and Effects of Cigarette Smoking, Cannabis Consumption, and Co-use in Adults From 15 Countries With Congenital Heart Disease. Can J Cardiol. 2019 Dec;35(12):1842-1850. doi: 10.1016/j.cjca.2019.07.635. Epub 2019 Aug 14. PMID: 31813510.</p> <p> </p> <p>This is the abstract:</p> <p><strong>Background: </strong>The prevalence and effects of cigarette smoking and cannabis use in persons with congenital heart disease (CHD) are poorly understood. We (1) described the prevalence of cigarette smoking, cannabis consumption, and co-use in adults with CHD; (2) investigated intercountry differences; (3) tested the relative effects on physical functioning, mental health, and quality of life (QOL); and (4) quantified the differential effect of cigarette smoking, cannabis use, or co-use on those outcomes.</p> <p><strong>Methods: </strong>APPROACH-IS was a cross-sectional study, including 4028 adults with CHD from 15 countries. Patients completed questionnaires to measure physical functioning, mental health, and QOL. Smoking status and cannabis use were assessed by means of the Health Behaviour Scale-Congenital Heart Disease. Linear models with doubly robust estimations were computed after groups were balanced with the use of propensity weighting.</p> <p><strong>Results: </strong>Overall, 14% of men and 11% of women smoked cigarettes only; 8% of men and 4% of women consumed cannabis only; and 4% of men and 1% of women used both substances. Large intercountry variations were observed, with Switzerland having the highest prevalence for smoking cigarettes (24% of men, 19% of women) and Canada the highest for cannabis use (19% of men, 4% of women). Cigarette smoking had a small negative effect on patient-reported outcomes, and the effect of cannabis was negligible. The effect of co-use was more prominent, with a moderate negative effect on mental health.</p> <p><strong>Conclusions: </strong>We found significant intercountry variability in cigarette and cannabis use in adults with CHD. Co-use has the most detrimental effects on patient-reported outcomes.</p>
Data set from the article Holbein CE, Veldtman GR, Moons P, Kovacs AH, Luyckx K, Apers S, Chidambarathanu S, Soufi A, Eriksen K, Jackson JL, Enomoto J, Fernandes SM, Johansson B, Alday L, Dellborg M, Berghammer M, Menahem S, Caruana M, Kutty S, Mackie AS, Thomet C, Budts W, White K, Sluman MA, Callus E, Cook SC, Khairy P, Cedars A; APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Perceived Health Mediates Effects of Physical Activity on Quality of Life in Patients With a Fontan Circulation. Am J Cardiol. 2019 Jul 1;124(1):144-150. doi: 10.1016/j.amjcard.2019.03.039. Epub 2019 Apr 10. PMID: 31030969.
<p>Data set from the article Holbein CE, Veldtman GR, Moons P, Kovacs AH, Luyckx K, Apers S, Chidambarathanu S, Soufi A, Eriksen K, Jackson JL, Enomoto J, Fernandes SM, Johansson B, Alday L, Dellborg M, Berghammer M, Menahem S, Caruana M, Kutty S, Mackie AS, Thomet C, Budts W, White K, Sluman MA, Callus E, Cook SC, Khairy P, Cedars A; APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Perceived Health Mediates Effects of Physical Activity on Quality of Life in Patients With a Fontan Circulation. Am J Cardiol. 2019 Jul 1;124(1):144-150. doi: 10.1016/j.amjcard.2019.03.039. Epub 2019 Apr 10. PMID: 31030969.</p> <p> </p> <p>This is the abstract:</p> <p>Patients with a Fontan circulation are at risk of a sedentary lifestyle. Given the direct relationship between physical activity and health, promotion of physical activity has the potential to improve outcomes, including quality of life (QOL). This study aimed to describe self-reported physical activity levels in adult Fontan patients and examine associations between physical activity, perceived health status and QOL. The sample consisted of 177 Fontan patients (M<sub>age</sub> = 27.5 ± 7.6 years, 52% male) who reported their physical activity, perceived health status, and QOL as part of the cross-sectional Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study. Descriptive statistics and univariate analyses of variance with planned contrasts were computed to describe physical activity characteristics. Mediation analyses tested whether perceived health status variables mediated the association between physical activity and QOL. Forty-six percent of patients were sedentary while only 40% met international physical activity guidelines. Higher physical activity was associated with younger age, lower NYHA class, higher perceived general health, and greater QOL. Patients who commuted by walking and engaged in sports reported better perceived health and QOL. Mediation analyses revealed that perceived general health but not NYHA functional class mediated the association between physical activity and QOL (αβ = 0.22, 95% confidence interval = 0.04 to 0.49). In conclusion, Fontan patients likely benefit from regular physical activity, having both higher perceived general health and functional capacity; greater perceived health status may contribute to enhanced QOL. In conclusion, these data support the pivotal role of regular physical activity for Fontan patients.</p>
The Role of Sensory Perception, Emotionality and Lifeworld in Auditory Word Processing: Evidence from Congenital Blindness and Synesthesia
<p>Data set of Papadopoulos, J., Domahs, F., & Kauschke, C. (2017). The Role of Sensory Perception, Emotionality and Lifeworld in Word Processing: Evidence from Congenital Blindness and Synesthesia.<em> Journal of Psycholinguistic Research</em>. Online first: DOI 10.1007/s10936-017-9511-1.</p> <p>Data on request.</p>
Rates of congenital syphilis per 1,000 live births in the priority municipalities and non-priority municipalities
<p>Rates of congenital syphilis per 1,000 live births in the priority municipalities and non-priority municipalities</p>
Predictors of reproductive and non-reproductive outcomes of gonadotropin mediated pubertal induction in male patients with congenital hypogonadotropic hypogonadism (CHH) dataset
<p>Dataseta for Predictors of reproductive and non-reproductive outcomes of gonadotropin mediated pubertal induction in male patients with congenital hypogonadotropic hypogonadism (CHH) <a href="https://doi.org/10.1007/S40618-021-01556-X"><strong>10.1007/S40618-021-01556-X</strong></a></p>
Genetic and phenotypic differences between sexes in congenital hypogonadotropic hopogonadism(CHH):large cohort analysis from a single tertiary Centre. DATASET
<p>Database of the paper</p> <p>Gender differences in congenital hypogonadotropic hypogonadism (CHH): an analysis in a large cohort of CHH patients and an insight in female genotype and phenotype</p>
INCLUDE: (Sherman) Genomic Analysis of Congenital Heart Defects and Acute Lymphoblastic Leukemia in Children with Down Syndrome
Namespace hosted on the Kids First DRC FHIR services at fhir.kidsfirstdrc.org
INCLUDE: (Lupo) Genomic Analysis of Congenital Heart Defects and Acute Lymphoblastic Leukemia in Children with Down Syndrome
Namespace hosted on the Kids First DRC FHIR services at fhir.kidsfirstdrc.org
INCLUDE: (PCGC) Genomic Analysis of Congenital Heart Defects and Acute Lymphoblastic Leukemia in Children with Down Syndrome
Namespace hosted on the Kids First DRC FHIR services at fhir.kidsfirstdrc.org
Genomic Analysis of Esophageal Atresia and Tracheoesophageal Fistulas and Associated Congenital Anomalies
Namespace hosted on the Kids First DRC FHIR services at fhir.kidsfirstdrc.org
Kids First: Genomic Analysis of Congenital Diaphragmatic Hernia
Namespace hosted on the Kids First DRC FHIR services at fhir.kidsfirstdrc.org
Kids First: Genomic Analysis of Congenital Heart Defects and Acute Lymphoblastic Leukemia in Children with Down Syndrome
Namespace hosted on the Kids First DRC FHIR services at fhir.kidsfirstdrc.org
raw data for "Two novel CACNA1F gene mutations cause two different phenotypes: Aland Eye Disease and Incomplete Congenital Stationary Night Blindness"
<p>DNA and mRNA sequences of two patients affected by CSNB2</p>
New insights into the neuropsychological profile and Intellectual Quotient variability in Joubert Syndrome compared to other congenital cerebellar malformations
<p>Data including IQ, Age and NEPSY-II aggregated indexes. </p>
ScienceDex guides
Understand access before you commit
These curated guides explain access requirements, typical timelines, costs, and reuse considerations for widely used research datasets.
Allen Brain Atlas
Allen Brain Atlas is an Allen Institute collection of brain map atlases, datasets, APIs, and analysis tools covering mouse, human, and non-human primate brain resources.
Annotated Behaviour and Observability Dataset (ABODe)
ABODe is a University of Edinburgh DataShare dataset for behavior classification in group-housed mice using home-cage video, identities, bounding boxes, ground-plate positions, and annotator labels.
DANDI Archive for NWB datasets
DANDI is a BRAIN Initiative archive for publishing and sharing neurophysiology data, including electrophysiology, optophysiology, and behavioral data packaged as NWB and related standards.
International Brain Laboratory public data
The International Brain Laboratory public data releases expose standardized mouse decision-making experiments, including Neuropixels recordings, widefield calcium imaging, behavior, and session metadata accessed through the ONE API.
OpenNeuro
OpenNeuro is a free, open platform for sharing neuroimaging datasets, with public search, dataset pages, and download paths for web, S3, DataLad, and the OpenNeuro CLI.