Skip to main content
Powered by ShareScore

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.

3,481

datasets available to search

ShareScore release 0.9.0

Reset

Dataset results

3,481 results for “data set”

Learn how ShareScore rates datasets ↗
zenodo12/100

Data set from the article Vianello E, Marrocco-Trischitta Massimiliano M, Dozio E, Bandera F, Tacchini L, Canciani E, Dellavia C, Schmitz G, Lorenzo M, Corsi Romanelli Massimiliano M. Correlational study on altered epicardial adipose tissue as a stratification risk factor for valve disease progression through IL-13 signaling. J Mol Cell Cardiol. 2019 Jul;132:210-218. doi: 10.1016/j.yjmcc.2019.05.012. Epub 2019 May 15. Erratum in: J Mol Cell Cardiol. 2019 Aug;133:112. PMID: 31102584.

<p>Data set from the article Vianello E, Marrocco-Trischitta Massimiliano M, Dozio E, Bandera F, Tacchini L, Canciani E, Dellavia C, Schmitz G, Lorenzo M, Corsi Romanelli Massimiliano M. Correlational study on altered epicardial adipose tissue as a stratification risk factor for valve disease progression through IL-13 signaling. J Mol Cell Cardiol. 2019 Jul;132:210-218. doi: 10.1016/j.yjmcc.2019.05.012. Epub 2019 May 15. Erratum in: J Mol Cell Cardiol. 2019 Aug;133:112. PMID: 31102584.</p> <p>This is the abstract:</p> <p><strong>Aims:&nbsp;</strong>Genetic and environmental factors all interact in the risk of progression of valvular dysfunctions. Previous studies reported a relation between valve diseases and epicardial adipose tissue (EAT) thickness. The aim of this study was to verify the possible relationship between the molecular pattern of EAT related to IL-13 fibrogenic cytokine expression and valve dysfunction.</p> <p><strong>Methods and results:&nbsp;</strong>A valvular heart disease (VHD) population was stratified according to their median EAT thickness (7 mm). The molecular expression of IL-13 in EAT is directly related to the molecular expression of genes associated with extracellular matrix (ECM) turnover, macrophage infiltration and promotion of the formation of ectopic calcific nodules involved in aorta coarctation and calcification.</p> <p><strong>Conclusion:&nbsp;</strong>IL-13 gene expression in altered EAT is directly related to the expression of genes involved in ECM turnover and the formation of ectopic calcific nodules, suggesting measurements of EAT as a stratification risk factor for valve instability in the VHD patients.</p> <p>&nbsp;</p>

restrictedMay 2020View details →
zenodo12/100

Data set fromthe article Voellenkle C, Perfetti A, Carrara M, Fuschi P, Renna LV, Longo M, Sain SB, Cardani R, Valaperta R, Silvestri G, Legnini I, Bozzoni I, Furling D, Gaetano C, Falcone G, Meola G, Martelli F. Dysregulation of Circular RNAs in Myotonic Dystrophy Type 1. Int J Mol Sci. 2019 Apr 19;20(8):1938. doi: 10.3390/ijms20081938. PMID: 31010208; PMCID: PMC6515344.

<p>Data set from the article Voellenkle C, Perfetti A, Carrara M, Fuschi P, Renna LV, Longo M, Sain SB, Cardani R, Valaperta R, Silvestri G, Legnini I, Bozzoni I, Furling D, Gaetano C, Falcone G, Meola G, Martelli F. Dysregulation of Circular RNAs in Myotonic Dystrophy Type 1. Int J Mol Sci. 2019 Apr 19;20(8):1938. doi: 10.3390/ijms20081938. PMID: 31010208; PMCID: PMC6515344.</p> <p>This is the abstract:</p> <p>Circular RNAs (circRNAs) constitute a recently re-discovered class of non-coding RNAs functioning as sponges for miRNAs and proteins, affecting RNA splicing and regulating transcription. CircRNAs are generated by &quot;back-splicing&quot;, which is the linking covalently of 3&#39;- and 5&#39;-ends of exons. Thus, circRNA levels might be deregulated in conditions associated with altered RNA-splicing. Significantly, growing evidence indicates their role in human diseases. Specifically, myotonic dystrophy type 1 (DM1) is a multisystemic disorder caused by expanded CTG repeats in the&nbsp;<em>DMPK</em>&nbsp;gene which results in abnormal mRNA-splicing. In this investigation, circRNAs expressed in DM1 skeletal muscles were identified by analyzing RNA-sequencing data-sets followed by qPCR validation. In muscle biopsies, out of nine tested, four transcripts showed an increased circular fraction: CDYL, HIPK3, RTN4_03, and ZNF609. Their circular fraction values correlated with skeletal muscle strength and with splicing biomarkers of disease severity, and displayed higher values in more severely affected patients. Moreover, Receiver-Operating-Characteristics curves of these four circRNAs discriminated DM1 patients from controls. The identified circRNAs were also detectable in peripheral-blood-mononuclear-cells (PBMCs) and the plasma of DM1 patients, but they were not regulated significantly. Finally, increased circular fractions of RTN4_03 and ZNF609 were also observed in differentiated myogenic cell lines derived from DM1 patients. In conclusion, this pilot study identified circRNA dysregulation in DM1 patients.</p>

restrictedJun 2020View details →
zenodo12/100

Data set from the article Lo Rito M, Grandinetti M, Muzio G, Varrica A, Frigiola A, Micheletti A, Chessa M, Giamberti A. Results for tricuspid valve surgery in adults with congenital heart disease other than Ebstein's anomaly†. Eur J Cardiothorac Surg. 2019 Oct 1;56(4):706-713. doi: 10.1093/ejcts/ezz093. PMID: 30919906.

<p>Data set from the article Lo Rito M, Grandinetti M, Muzio G, Varrica A, Frigiola A, Micheletti A, Chessa M, Giamberti A. Results for tricuspid valve surgery in adults with congenital heart disease other than Ebstein&#39;s anomaly&dagger;. Eur J Cardiothorac Surg. 2019 Oct 1;56(4):706-713. doi: 10.1093/ejcts/ezz093. PMID: 30919906.</p> <p>This is the abstract:</p> <p><strong>Objectives:&nbsp;</strong>Tricuspid valve (TV) surgery in the adult with congenital heart disease (ACHD) is a frequently performed procedure. The aim of this study was to analyse postoperative and medium-term outcomes.</p> <p><strong>Methods:&nbsp;</strong>We conducted a single-centre retrospective study of patients with ACHD who underwent TV surgery (January 2000-December 2016); patients with Ebstein&#39;s anomalies were excluded. Operative and clinical records were reviewed. Outcomes considered were survival, grade of insufficiency/stenosis and TV reoperation at follow-up.</p> <p><strong>Results:&nbsp;</strong>A total of 128 patients with ACHD had TV surgery for functional regurgitation (n = 95), dysplasia (n = 23) and systemic TV (n = 10). Median age was 40.8 years [interquartile range (IQR) 25.3]; 55.5% were men. Preoperative regurgitation was classified as mild (n = 8), moderate (n = 47) and severe (n = 70). The TV was repaired in 109 as follows: ring annuloplasty (n = 43), de Vega annuloplasty (n = 29), Wooler annuloplasty (n = 13), commissural plasty (n = 9), Kay annuloplasty (n = 7) and others (n = 8). The TV was replaced in 19 patients with biological (n = 10) and mechanical (n = 9) prostheses. The median hospital stay was 12 days (IQR 10). The overall mortality rate was 8.6% (n = 11): 2 hospital deaths (1.6%) and 9 late deaths. Survival was 93% [95% confidence interval (CI) 85-97%] at 5 years and 83% (95% CI 70-91%) at 10 years. The median follow-up period was 4.95 years (IQR 7.7) with 1 TV reoperation. Echocardiographic assessment showed &ge;moderate regurgitation in 34 (34.3%) patients. Suture plasty had a significantly higher incidence of TV regurgitation &ge;moderate compared to ring annuloplasty (48.9% vs 26.3%; P = 0.033).</p> <p><strong>Conclusions:&nbsp;</strong>TV surgery in the ACHD is frequently associated with other main procedures. Stabilizing the TV annulus with a prosthetic ring guarantees lower recurrence of moderate to severe regurgitation compared to suture plasty repair.</p>

restrictedJun 2020View details →
zenodo12/100

Data set from the article Prinzivalli M, Sammarco G, Rampoldi B, Costa E, Corsi Romanelli MM. Comparison between specific and nonspecific assay in the evaluation of the anticoagulant effect of the Direct Oral Anticoagulants: Our experience in a cardiovascular hospital. Eur J Intern Med. 2019;60:e20‐e22. doi:10.1016/j.ejim.2018.10.005

<p>Data set from the article Prinzivalli M, Sammarco G, Rampoldi B, Costa E, Corsi Romanelli MM. Comparison between specific and nonspecific assay in the evaluation of the anticoagulant effect of the Direct Oral Anticoagulants: Our experience in a cardiovascular hospital.&nbsp;<em>Eur J Intern Med</em>. 2019;60:e20‐e22. doi:10.1016/j.ejim.2018.10.005</p>

restrictedJun 2020View details →
zenodo12/100

Data set from the article Giamberti A, Chessa M, Chiarello C, Cipriani A, Carotti A, Galletti L, Gargiulo G, Marianeschi SM, Pace Napoleone C, Padalino M, Perri G, Luciani GB. Italian survey on cardiac surgery for adults with congenital heart disease: which surgery, where and by whom? Interact Cardiovasc Thorac Surg. 2019 Mar 25:ivz045. doi: 10.1093/icvts/ivz045. Epub ahead of print. PMID: 30907407.

<p>Data set from the article Giamberti A, Chessa M, Chiarello C, Cipriani A, Carotti A, Galletti L, Gargiulo G, Marianeschi SM, Pace Napoleone C, Padalino M, Perri G, Luciani GB. Italian survey on cardiac surgery for adults with congenital heart disease: which surgery, where and by whom? Interact Cardiovasc Thorac Surg. 2019 Mar 25:ivz045. doi: 10.1093/icvts/ivz045. Epub ahead of print. PMID: 30907407.</p> <p>This is the abstract</p> <p><strong>Objectives:&nbsp;</strong>The population of ageing adults with congenital heart disease (ACHD) is increasing; surgery in these patients presents major difficulties in management. A great debate has developed about whether these patients should be cared for at an adult or paediatric hospital and by an acquired or congenital cardiac surgeon. We analysed data of the surgical treatment of ACHD from the Italian cardiac surgery centres in 2016, focusing on the type of surgery performed, where these patients were operated on and by whom.</p> <p><strong>Methods:&nbsp;</strong>Ninety-two Italian cardiac surgery centres were contacted and 70 centres participated in this study. We collected data on the types of cardiac operations performed in congenital heart defect patients older than 18 years. In 2016, a total of 913 patients with ACHD were operated on: 440 by congenital cardiac surgeons (group I) in centres with paediatric and adult cardiac surgery units, and 473 by adult cardiac surgeons (group II) in centres with exclusively adult cardiac surgery units.</p> <p><strong>Results:&nbsp;</strong>Pathologies of the right ventricular outflow tract were the most frequent diseases treated in group I and pathologies of the left ventricular outflow tract in group II. Group I included more complex and heterogeneous cases than group II. Surgery for ACHD represented 12% of the activity of congenital cardiac surgeons and only 1% of the activity of adult cardiac surgeons.</p> <p><strong>Conclusions:&nbsp;</strong>In Italy, ACHD patients are operated on both by congenital and adult cardiac surgeons. Congenital cardiac surgeons working in centres with both paediatric and adult cardiac surgery are more involved with ACHD patients and with more complex cases.</p>

restrictedJun 2020View details →
zenodo12/100

Data set from Varga A, Di Leo G, Banga PV, Csobay-Novák C, Kolossváry M, Maurovich-Horvat P, Hüttl K. Multidetector CT angiography of the Circle of Willis: association of its variants with carotid artery disease and brain ischemia. Eur Radiol. 2019 Jan;29(1):46-56. doi: 10.1007/s00330-018-5577-x. Epub 2018 Jun 19. PMID: 29922933; PMCID: PMC6291432.

<p>Data set from the article Data set from Varga A, Di Leo G, Banga PV, Csobay-Nov&aacute;k C, Kolossv&aacute;ry M, Maurovich-Horvat P, H&uuml;ttl K. Multidetector CT angiography of the Circle of Willis: association of its variants with carotid artery disease and brain ischemia. Eur Radiol. 2019 Jan;29(1):46-56. doi: 10.1007/s00330-018-5577-x. Epub 2018 Jun 19. PMID: 29922933; PMCID: PMC6291432.</p> <p>This is the abstract</p> <p><strong>Purpose: </strong> (1) to estimate the prevalence of Circle of Willis (CoW) variants in patients undergoing carotid endarterectomy, (2) to correlate these variants to controls and (3) cerebral ischemia depicted by computed tomography (CT).</p> <p><strong>Materials and methods: </strong> After Institutional Review Board approval, data of 544 carotid endarterectomy patients (331 males, mean age 69&plusmn;8 years) and 196 controls (117 males, mean age 66&plusmn;11 years) who underwent brain CT and carotid CT angiography (CTA) were retrospectively analysed. Two observers independently classified each CoW segment as normal, hypoplastic (diameter &lt;0.8 mm) or non-visualized. Four groups of CoW variants based on the number of hypoplastic/non-visualized segments were correlated with clinical data (ANOVA, &chi;<sup>2</sup> and multivariate logistic regression analysis). Intra- and inter-observer agreement was estimated using Cohen &kappa; statistics.</p> <p><strong>Results: </strong> High prevalence of CoW variants (97%) and compromised CoW (81%) was observed in the study group and significant difference was found in the distribution of CoW variants compared to controls (p&lt;0.001), internal carotid artery (ICA) stenosis being the only independent predictor of CoW morphology (p&lt;0.001). Significant correlation was found between CoW configuration and brain ischemia in the study group (p=0.002). ICA stenosis of &ge;90% was associated to higher rate of ipsilateral A1 hypoplasia/non-visualization (p&lt;0.001). Intra- and inter-observer agreement was from substantial to almost perfect (Cohen &kappa;=0.75-1.0).</p> <p><strong>Conclusion: </strong> Highly variable CoW morphology was demonstrated in patients undergoing endarterectomy compared to controls. Likely compromised CoW in relation to cerebral ischemia was observed in a large cohort of carotid endarterectomy subjects.</p> <p><strong>Key points: </strong> &bull; CoW variant distribution significantly differed in the study and control groups (p&lt;0.001). &bull; ICA stenosis was the only independent predictor of CoW morphology (p&lt;0.001). &bull; Severely compromised CoW configuration showed significant association with brain ischemia (p=0.002).</p>

restrictedJun 2020View details →
zenodo12/100

Data set from the article Settembrini AM, Mazzaccaro D, Modafferi A, Righini P, Malacrida G, Nano G. Carotid artery stenting in the elderly. Are there differences between open and closed cell stents? Ann Ital Chir. 2019;90:106-110. PMID: 31182697.

<p>data set from the article Settembrini AM, Mazzaccaro D, Modafferi A, Righini P, Malacrida G, Nano G. Carotid artery stenting in the elderly. Are there differences between open and closed cell stents? Ann Ital Chir. 2019;90:106-110. PMID: 31182697.</p> <p>This is the abstract</p> <p><strong>Introduction:&nbsp;</strong>We reviewed our experience of carotid artery stenting (CAS) in patients older than 75 years treated with open or closed cell stents. The aim of our paper is to evaluate if there are differences between the two groups in term of clinical outcomes, neurological impairment and survival.</p> <p><strong>Material and methods:&nbsp;</strong>CAS consecutively performed from March 2000 and December 2016 in elderly patients were rectrospectively collected. We classified them into two groups: closed cells (group A) and open cells stent (group B). Perioperative and long term events were observed (death, major cerebrovascular and cardiovascular events, in-stent restenosis).</p> <p><strong>Results:&nbsp;</strong>We collected 429 CAS, 259 (60.37%) male with median age of 79 years (range 77-82). Group A collects 247 (57.98%) patients, 142 (33.3%) in group B. The other 40 patients were treated with hybrid stents or just ballooning. In perioperative period we had not death but 2 patients (0.8%) in group A had a transient ischemic attack (TIA) due to immediate stent thrombosis, 2 patients (1 per group) had an ipsilateral major stroke and 8 patients had a TIA (3 in group A and 5 in group B). Median follow up was 686 days (IQR 267-1299 days). Freedom from complications at 12, 36 and 60 months was 99.4 &plusmn; 0.5%, 97 &plusmn; 1.5% and 90.08 &plusmn; 4.3% respectively. Survival at 12, 36 and 60 months was 77.4 &plusmn; 7.5%, 51.6 &plusmn; 8.9% and 16.1&plusmn; 6.6% respectively.</p> <p><strong>Conclusion:&nbsp;</strong>Our data show CAS as a safe procedure also for people older than 75 years in terms of perioperative and long term complications and cerebral events without any significant difference between the different type of stent. Further studies are requested to better clarify its role in symptomatic patients.</p>

restrictedJun 2020View details →
zenodo12/100

Data set from the article Mazzaccaro D, Muzzarelli L, Modafferi A, Nano G. Sizes of endografts for endovascular aortic repair: do few fit most? Ann Ital Chir. 2019;90:287-291. PMID: 31657351.

<p>Data set from the article Mazzaccaro D, Muzzarelli L, Modafferi A, Nano G. Sizes of endografts for endovascular aortic repair: do few fit most? Ann Ital Chir. 2019;90:287-291. PMID: 31657351.</p> <p>&nbsp;</p> <p>This is the abstract</p> <p><strong>Aim: </strong> The endoprostheses for the endovascular aortic repair (EVAR) of abdominal aortic aneurysms (AAA), are currently available in many sizes in reference to the aortic diameters of the proximal neck, but often not all of them are really used. Aim of our work was to review in our experience the most frequent proximal aortic diameters of main bodies that were used, among all those available for EVAR, with respect to the native proximal aortic neck.</p> <p><strong>Methods: </strong> All the sizes of main bodies of the different endografts used for EVAR from 2000 to 2016 were retrospectively counted. For each endograft, we calculated the number of times each size of main bodies&#39; proximal diameter was used. The mean diameter of the proximal aortic neck was also calculated for each group of main bodies.</p> <p><strong>Results: </strong> From 2000 to 2016, 607 patients underwent EVAR for infrarenal AAA. Overall, mean diameter of the proximal aortic neck was 23.4 &plusmn; 0.5 mm (median 23.1 mm, IQR 22.2-23.7 mm). The most frequently used main bodies had a 28 mm, 26 mm and 25 mm proximal diameter (161/607, 26.5%; 147/607, 24.2%; 122/607, 20.1% respectively), for a mean proximal neck diameter of 23.2 &plusmn; 0.5 mm, 22.2 &plusmn; 0.4 mm and 22.1 &plusmn; 0.2 respectively. The least frequently used main bodies had a 21 mm and a 36 mm proximal diameter (3/607 times each, 0.5%), for a mean proximal neck diameter of 18.1 &plusmn; 0.2 mm and 32.4 &plusmn; 0.8 mm respectively.</p> <p><strong>Conclusions: </strong> In our experience, the most frequently used main bodies had a 25, 26 and 28 mm proximal diameters.</p>

restrictedJun 2020View details →
zenodo12/100

DEPRECATED: Data Set for Systematic Mapping Study: User-operated Audiometry

<p>DEPRECATED: The collected data used to analyze the research field of user-operated audiometry through a mapping study. The ods file version of the data set is downloaded from a Google Spreadsheets file. First named author can be contacted if any issues with this fileformat presents itself, and a copy of the Google Spreadsheets file can maybe be shared instead.</p>

restrictedJun 2020View details →
zenodo12/100

Data set for- The dominant sellers and brands on Flipkart: Observations through analysis of top five most-rated products across selected highly searched electronic categories

<p>Data set for- The dominant sellers and brands on Flipkart: Observations through analysis of top five most-rated products across selected highly searched electronic categories&nbsp;</p>

restrictedJul 2020View details →
zenodo12/100

Data set from Dellafiore F, Arrigoni C, Ghizzardi G, Baroni I, Conte G, Turrini F, Castiello G, Magon A, Pittella F, Caruso R. Development and validation of the pressure ulcer management self-efficacy scale for nurses. J Clin Nurs. 2019 Sep;28(17-18):3177-3188. doi: 10.1111/jocn.14875. Epub 2019 Apr 21. PMID: 30938908.

<p>Data set from Dellafiore F, Arrigoni C, Ghizzardi G, Baroni I, Conte G, Turrini F, Castiello G, Magon A, Pittella F, Caruso R. Development and validation of the pressure ulcer management self-efficacy scale for nurses. J Clin Nurs. 2019 Sep;28(17-18):3177-3188. doi: 10.1111/jocn.14875. Epub 2019 Apr 21. PMID: 30938908</p> <p>&nbsp;</p> <p>This is the abstract:</p> <p><strong>Background:&nbsp;</strong>Pressure ulcers (PUs) represent a current issue for healthcare delivery. Nurse self-efficacy in managing PUs could predict patients&#39; outcome, being a proxy assessment of their overall competency to managing PUs. However, a valid and reliable scale of this task-specific self-efficacy has not yet been developed.</p> <p><strong>Objectives:&nbsp;</strong>To develop a valid and reliable scale to assess nurses&#39; self-efficacy in managing PUs, that is, the pressure ulcer management self-efficacy scale for nurses (PUM-SES).</p> <p><strong>Methods:&nbsp;</strong>This study had a multi-method and multi-phase design, where study reporting was supported by the STROBE checklist (File S1). Phase 1 referred to the scale development, consisting in the items&#39; generation, mainly based on themes emerged from the literature and discussed within a panel of experts. Phase 2 focused on a three-step validation process: the first step aimed to assess face and content validity of the pool of items previously generated (initial version of the PUM-SES); the second aimed to assess psychometrics properties through exploratory factorial analysis; the third step assessed construct validity through confirmative factorial analysis, while concurrent validity was evaluated describing the relationships between PUM-SES and an established general self-efficacy measurement. Reliability was assessed through the evaluation of stability and internal consistency.</p> <p><strong>Results:&nbsp;</strong>PUM-SES showed evidence of face and content validity, adequate construct and concurrent validity, internal consistency and stability. Specifically, PUM-SES had four domains, labelled as follows: assessment, planning, supervision and decision-making. These domains were predicted by the same second-order factor, labelled as PU management self-efficacy.</p> <p><strong>Conclusion:&nbsp;</strong>PUM-SES is a 10-item scale to measure nurses&#39; self-efficacy in PU management. A standardised 0-100 scoring is suggested for computing each domain and the overall scale. PUM-SES might be used in clinical and educational research.</p> <p><strong>Relevance to clinical practice:&nbsp;</strong>Optimising nurses&#39; self-efficacy in PU management might enhance clinical assessment, determining better outcomes in patients with PUs.</p> <p>&nbsp;</p>

restrictedSep 2020View details →
zenodo12/100

Data set from Dellafiore F, Caruso R, Conte G, Grugnetti AM, Bellani S, Arrigoni C. Individual-level determinants of interprofessional team collaboration in healthcare. J Interprof Care. 2019 Nov-Dec;33(6):762-767. doi: 10.1080/13561820.2019.1594732. Epub 2019 Apr 21. PMID: 31006297.

<p>Data set from Dellafiore F, Caruso R, Conte G, Grugnetti AM, Bellani S, Arrigoni C. Individual-level determinants of interprofessional team collaboration in healthcare. J Interprof Care. 2019 Nov-Dec;33(6):762-767. doi: 10.1080/13561820.2019.1594732. Epub 2019 Apr 21. PMID: 31006297.</p> <p>&nbsp;</p> <p>This is the abstract:</p> <p>Interprofessional team collaboration (ITC) is pivotal for the safety and the quality of healthcare settings, being associated with higher staff and patient satisfaction. However, individual-level determinants (i.e. socio-demographic and working satisfaction) remain currently largely unexplored. This study aimed to describe the overall ITC (i.e. partnership, cooperation, coordination), identifying the individual-level determinants of each ITC domain. This study had a multicentre approach, using cross-sectional data collection. ITC was assessed using the Interprofessional Team Collaboration Scale II, Italian version (I-AITCS II). The determinants of ITC were investigated through multivariable linear regression models. The study results showed significant associations between the same ITC domains, as well as the important role of work satisfaction in determining cooperation and coordination. Physicians reported more inadequate partnership levels than other healthcare professionals. This study provides insights for future research and gives a useful description of the determinants of ITC for multi-stakeholder healthcare organizations.</p> <p>&nbsp;</p>

restrictedSep 2020View details →
zenodo12/100

Data set from Dellafiore F, Caruso R, Arrigoni C, Flocco SF, Giamberti A, Chessa M. Lifestyles and determinants of perceived health in Italian grown-up/adult congenital heart patients: a cross-sectional and pan-national survey. BMJ Open. 2019 Oct 18;9(10):e030917. doi: 10.1136/bmjopen-2019-030917. PMID: 31630105; PMCID: PMC6803081.

<p>Data set from Dellafiore F, Caruso R, Arrigoni C, Flocco SF, Giamberti A, Chessa M. Lifestyles and determinants of perceived health in Italian grown-up/adult congenital heart patients: a cross-sectional and pan-national survey. BMJ Open. 2019 Oct 18;9(10):e030917. doi: 10.1136/bmjopen-2019-030917. PMID: 31630105; PMCID: PMC6803081.</p> <p>&nbsp;</p> <p>This is the abstract:</p> <p><strong>Objectives:&nbsp;</strong>To provide the first epidemiological lifestyle descriptions of the Italian grown-up/adult congenital heart disease (GUCH/ACHD) population by identifying the determinants of poor perceived health status.</p> <p><strong>Design:&nbsp;</strong>Cross-sectional pan-national survey.</p> <p><strong>Setting:&nbsp;</strong>Italian GUCH/ACHD patients who were members of the Italian Association of GUCH/ACHD.</p> <p><strong>Primary and secondary outcome measures:&nbsp;</strong>To discuss these lifestyle descriptions through an ad hoc developed questionnaire and health perceptions (ie, mental and physical health perception) through a short form health survey (SF-12).</p> <p><strong>Results:&nbsp;</strong>629 patients included; many investigated GUCH/ACHD lifestyles were determined similar to those of the general population - with the exception of the smoking habits, which were lower. The odds of the occurrence of inadequate physical health perceptions increased by more than two times in patients undergoing antiarrhythmic therapies (OR adjusted=2.045; 95% CI=1.201 to 3.479; p=0.008; n=629), more than 1.5 times in patients taking oral anticoagulants (OR adjusted=1.638; 95% CI=1.038 to 2.585; p=0.034; n=629) and roughly 1.7 times in patients treated with antiplatelets (OR adjusted=1.743; 95% CI=1.024 to 2.966; p=0.041; n=629). The odds of the occurrence of inadequate mental health perceptions increased by 1.7% for every year that the patients aged (OR adjusted=1.017; 95% CI=1.002 to 1.032; p=0.025; n=629).</p> <p><strong>Conclusion:&nbsp;</strong>Particular attention should be paid to these ageing patients&#39; increasing psychological needs, and additional research is needed to identify associations between their lifestyles and clinical outcomes.</p> <p>&nbsp;</p>

restrictedSep 2020View details →
zenodo12/100

Data set from Caruso R, Grugnetti AM, Pastore U, Dellafiore F, Pittella F, Ausili D, Stievano A, Arrigoni C. Modified Research Utilization Questionnaire: Development and Validation Study among Italian Nurses. Asian Nurs Res (Korean Soc Nurs Sci). 2019 Feb;13(1):61-68. doi: 10.1016/j.anr.2019.01.006. Epub 2019 Jan 18. PMID: 30660835.

<p>Data set from Caruso R, Grugnetti AM, Pastore U, Dellafiore F, Pittella F, Ausili D, Stievano A, Arrigoni C. Modified Research Utilization Questionnaire: Development and Validation Study among Italian Nurses. Asian Nurs Res (Korean Soc Nurs Sci). 2019 Feb;13(1):61-68. doi: 10.1016/j.anr.2019.01.006. Epub 2019 Jan 18. PMID: 30660835.</p> <p>&nbsp;</p> <p>This is the abstract:</p> <p><strong>Purpose:&nbsp;</strong>The purpose of this study was to develop the modified research utilization questionnaire (M-RUQ) and to establish its content and face validity, construct validity, and reliability.</p> <p><strong>Methods:&nbsp;</strong>This study has a multiphase (three phases), methodological, and cross-sectional design. First, research utilization questionnaire (RUQ) was translated into Italian, which is the target language to develop the M-RUQ. Second, the RUQ psychometric proprieties were assessed using exploratory factorial analysis to identify ambiguous or problematic items (e.g., cross-loadings) (cross-sectional sampling A). The RUQ modification (i.e., item deleting, wording modification, and scoring procedure) represented the development of the M-RUQ among Italian nurses. The third phase was aimed to confirm the construct validity of the M-RUQ and to test its stability and internal consistency (cross-sectional sampling B).</p> <p><strong>Results:&nbsp;</strong>This study&#39;s findings show that M-RUQ has a three-dimensional structure and a total of 22 items. The M-RUQ shows evidence of validity and reliability. Precisely, the factorial structure coming from an exploratory factorial analysis on the first sample (n = 504) was confirmed by a final model of confirmatory factorial analysis (CFA) on a second sample (n = 362). The final CFA model showed adequate goodness of fit, where all the factor loadings showed values higher than .40. Cronbach&#39;s &alpha; was satisfactory for each domain and for the overall scale. Furthermore, the M-RUQ showed good stability described by the test-retest.</p> <p><strong>Conclusion:&nbsp;</strong>The M-RUQ should be used to assess research utilization among nurses for educational or research purposes to address the practice. Further research about its validity and reliability is suggested.</p> <p>&nbsp;</p>

restrictedSep 2020View details →
zenodo12/100

Data set from Sluman MA, Apers S, Sluiter JK, Nieuwenhuijsen K, Moons P, Luyckx K, Kovacs AH, Thomet C, Budts W, Enomoto J, Yang HL, Jackson JL, Khairy P, Cook SC, Subramanyan R, Alday L, Eriksen K, Dellborg M, Berghammer M, Mattsson E, Mackie AS, Menahem S, Caruana M, Gosney K, Soufi A, Fernandes SM, White KS, Callus E, Kutty S, Bouma BJ, Mulder BJM; APPROACH-IS consortium, the International Society for Adult Congenital Heart Disease (ISACHD). Education as important predictor for successful employment in adults with congenital heart disease worldwide. Congenit Heart Dis. 2019 May;14(3):362-371. doi: 10.1111/chd.12747. Epub 2019 Feb 4. PMID: 30714326; PMCID: PMC6849520.

<p>Data set from Sluman MA, Apers S, Sluiter JK, Nieuwenhuijsen K, Moons P, Luyckx K, Kovacs AH, Thomet C, Budts W, Enomoto J, Yang HL, Jackson JL, Khairy P, Cook SC, Subramanyan R, Alday L, Eriksen K, Dellborg M, Berghammer M, Mattsson E, Mackie AS, Menahem S, Caruana M, Gosney K, Soufi A, Fernandes SM, White KS, Callus E, Kutty S, Bouma BJ, Mulder BJM; APPROACH-IS consortium, the International Society for Adult Congenital Heart Disease (ISACHD). Education as important predictor for successful employment in adults with congenital heart disease worldwide. Congenit Heart Dis. 2019 May;14(3):362-371. doi: 10.1111/chd.12747. Epub 2019 Feb 4. PMID: 30714326; PMCID: PMC6849520.</p> <p>&nbsp;</p> <p>This is the abstract:</p> <p><strong>Background:&nbsp;</strong>Conflicting results have been reported regarding employment status and work ability in adults with congenital heart disease (CHD). Since this is an important determinant for quality of life, we assessed this in a large international adult CHD cohort.</p> <p><strong>Methods:&nbsp;</strong>Data from 4028 adults with CHD (53% women) from 15 different countries were collected by a uniform survey in the cross-sectional APPROACH International Study. Predictors for employment and work limitations were studied using general linear mixed models.</p> <p><strong>Results:&nbsp;</strong>Median age was 32 years (IQR 25-42) and 94% of patients had at least a high school degree. Overall employment rate was 69%, but varied substantially among countries. Higher education (OR 1.99-3.69) and having a partner (OR 1.72) were associated with more employment; female sex (OR 0.66, worse NYHA functional class (OR 0.67-0.13), and a history of congestive heart failure (OR 0.74) were associated with less employment. Limitations at work were reported in 34% and were associated with female sex (OR 1.36), increasing age (OR 1.03 per year), more severe CHD (OR 1.31-2.10), and a history of congestive heart failure (OR 1.57) or mental disorders (OR 2.26). Only a university degree was associated with fewer limitations at work (OR 0.62).</p> <p><strong>Conclusions:&nbsp;</strong>There are genuine differences in the impact of CHD on employment status in different countries. Although the majority of adult CHD patients are employed, limitations at work are common. Education appears to be the main predictor for successful employment and should therefore be encouraged in patients with CHD.</p> <p>&nbsp;</p>

restrictedSep 2020View details →
zenodo12/100

Data set from the article Lévesque V, Laplante L, Shohoudi A, Apers S, Kovacs AH, Luyckx K, Thomet C, Budts W, Enomoto J, Sluman MA, Lu CW, Jackson JL, 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, Brouillette J, Casteigt B, Moons P, Khairy P; APPROACH-IS Consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Implantable cardioverter-defibrillators and patient-reported outcomes in adults with congenital heart disease: An international study. Heart Rhythm. 2020 May;17(5 Pt A):768-776. doi: 10.1016/j.hrthm.2019.11.026. Epub 2019 Nov 30. PMID: 31790832.

<p>Data set from the article L&eacute;vesque V, Laplante L, Shohoudi A, Apers S, Kovacs AH, Luyckx K, Thomet C, Budts W, Enomoto J, Sluman MA, Lu CW, Jackson JL, 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, Brouillette J, Casteigt B, Moons P, Khairy P; APPROACH-IS Consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Implantable cardioverter-defibrillators and patient-reported outcomes in adults with congenital heart disease: An international study. Heart Rhythm. 2020 May;17(5 Pt A):768-776. doi: 10.1016/j.hrthm.2019.11.026. Epub 2019 Nov 30. PMID: 31790832.</p> <p>&nbsp;</p> <p>This is the abstract:</p> <p><strong>Background:&nbsp;</strong>Implantable cardioverter-defibrillators (ICDs) are increasingly being used to prevent sudden death in the growing population of adults with congenital heart disease (CHD). However, little is known about their impact on patient-reported outcomes (PROs).</p> <p><strong>Objective:&nbsp;</strong>The purpose of this study was to assess and compare PROs in adults with CHD with and without ICDs.</p> <p><strong>Methods:&nbsp;</strong>A propensity-based matching weight analysis was conducted to evaluate PROs in an international cross-sectional study of adults with CHD from 15 countries across 5 continents.</p> <p><strong>Results:&nbsp;</strong>A total of 3188 patients were included: 107 with ICDs and 3081 weight-matched controls without ICDs. ICD recipients were an average age of 40.1 &plusmn; 12.4 years, and &gt;95% had moderate or complex CHD. Defibrillators were implanted for primary and secondary prevention in 38.3% and 61.7%, respectively. Perceived health status, psychological distress, sense of coherence, and health behaviors did not differ significantly among patients with and without ICDs. However, ICD recipients had a more threatening view of their illness (relative % difference 8.56; P = .011). Those with secondary compared to primary prevention indications had a significantly lower quality-of-life score (Linear Analogue Scale 72.0 &plusmn; 23.1 vs 79.2 &plusmn; 13.0; P = .047). Marked geographic variations were observed. Overall sense of well-being, assessed by a summary score that combines various PROs, was significantly lower in ICD recipients (vs controls) from Switzerland, Argentina, Taiwan, and the United States.</p> <p><strong>Conclusion:&nbsp;</strong>In an international cohort of adults with CHD, ICDs were associated with a more threatening illness perception, with a lower quality of life in those with secondary compared to primary prevention indications. However, marked geographic variability in PROs was observed.</p> <p>&nbsp;</p>

restrictedSep 2020View details →
zenodo12/100

Data set from Moons P, Luyckx K, Dezutter J, Kovacs AH, Thomet C, Budts W, Enomoto J, Sluman MA, Yang HL, Jackson JL, Khairy P, Subramanyan R, 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; International Society for Adult Congenital Heart Disease (ISACHD). Religion and spirituality as predictors of patient-reported outcomes in adults with congenital heart disease around the globe. Int J Cardiol. 2019 Jan 1;274:93-99. doi: 10.1016/j.ijcard.2018.07.103. Epub 2018 Jul 23. PMID: 30077534.

<p>Data set from Moons P, Luyckx K, Dezutter J, Kovacs AH, Thomet C, Budts W, Enomoto J, Sluman MA, Yang HL, Jackson JL, Khairy P, Subramanyan R, 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; International Society for Adult Congenital Heart Disease (ISACHD). Religion and spirituality as predictors of patient-reported outcomes in adults with congenital heart disease around the globe. Int J Cardiol. 2019 Jan 1;274:93-99. doi: 10.1016/j.ijcard.2018.07.103. Epub 2018 Jul 23. PMID: 30077534.</p> <p>&nbsp;</p> <p>This is the abstract:</p> <p><strong>Aims:&nbsp;</strong>Religion and spirituality can be resources for internal strength and resilience, and may assist with managing life&#39;s challenges. Prior studies have been undertaken primarily in countries with high proportions of religious/spiritual people. We investigated (i) whether being religious/spiritual is an independent predictor of patient-reported outcomes (PROs) in a large international sample of adults with congenital heart disease, (ii) whether the individual level of importance of religion/spirituality is an independent predictor for PROs, and (iii) if these relationships are moderated by the degree to which the respective countries are religious or secular.</p> <p><strong>Methods and results:&nbsp;</strong>APPROACH-IS was a cross-sectional study, in which 4028 patients from 15 countries were enrolled. Patients completed questionnaires to measure perceived health status; psychological functioning; health behaviors; and quality of life. Religion/spirituality was measured using three questions: Do you consider yourself religious or spiritual?; How important is religion, spirituality, or faith in your life?; and If religious, to what religion do you belong?. The country level of religiosity/secularity was appraised using data from the Gallup Poll 2005-2009. General linear mixed models, adjusting for patient characteristics and country differences were applied. Overall, 49.2% of patients considered themselves to be religious/spiritual. Being religious/spiritual and considering religion/spirituality as important in one&#39;s life was positively associated with quality of life, satisfaction with life and health behaviors. However, among patients living in more secular countries, religion/spirituality was negatively associated with physical and mental health.</p> <p><strong>Conclusion:&nbsp;</strong>Religiosity/spirituality is an independent predictor for some PROs, but has differential impact across countries.</p> <p><strong>Keywords:</strong>;</p>

restrictedSep 2020View details →
zenodo12/100

Data set from the article Ko JM, White KS, Kovacs AH, Tecson KM, Apers S, Luyckx K, Thomet C, Budts W, Enomoto J, Sluman MA, Wang JK, 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, Callus E, Kutty S, Moons P, Cedars AM; APPROACH-IS consortium and International Society for Adult Congenital Heart Disease (ISACHD). Differential impact of physical activity type on depression in adults with congenital heart disease: A multi-center international study. J Psychosom Res. 2019 Sep;124:109762. doi: 10.1016/j.jpsychores.2019.109762. Epub 2019 Jul 5. PMID: 31443808.

<p>Data set from the article Ko JM, White KS, Kovacs AH, Tecson KM, Apers S, Luyckx K, Thomet C, Budts W, Enomoto J, Sluman MA, Wang JK, 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, Callus E, Kutty S, Moons P, Cedars AM; APPROACH-IS consortium and International Society for Adult Congenital Heart Disease (ISACHD). Differential impact of physical activity type on depression in adults with congenital heart disease: A multi-center international study. J Psychosom Res. 2019 Sep;124:109762. doi: 10.1016/j.jpsychores.2019.109762. Epub 2019 Jul 5. PMID: 31443808.</p> <p>&nbsp;</p> <p>This is the abstract of the article:</p> <p><strong>Objective:&nbsp;</strong>This study aimed to examine the association between physical activity (PA) and depression in a large international cohort of adults with congenital heart disease (ACHD) as data about the differential impact of PA type on depression in this population are lacking.</p> <p><strong>Methods:&nbsp;</strong>In 2018, we conducted a cross-sectional assessment of 3908 ACHD recruited from 24 ACHD-specialized centers in 15 countries between April 2013 to March 2015. The Hospital Anxiety and Depression Scale was used to assess self-reported depressive symptoms and the Health-Behavior Scale-Congenital Heart Disease was used to collect PA information. Cochran-Armitage tests were performed to assess trends between depressive symptom levels and PA participation. Chi-Square and Wilcoxon Rank Sum tests were utilized to examine relations between depressive symptom levels and patient characteristics. Stepwise multivariable models were then constructed to understand the independent impact of PA on depressive symptoms.</p> <p><strong>Results:&nbsp;</strong>The overall prevalence of elevated depressive symptoms in this sample was 12% with significant differences in rates between countries (p &lt; .001). Physically active individuals were less likely to be depressed than those who were sedentary. Of the 2 PA domains examined, sport participation rather than active commute was significantly associated with reduced symptoms of depression. After adjustment in multivariable analysis, sport participation was still significantly associated with 38% decreased probability of depressive symptoms (p &lt; .001).</p> <p><strong>Conclusions:&nbsp;</strong>Sport participation is independently associated with reduced depressive symptoms. The development and promotion of sport-related exercise prescriptions uniquely designed for ACHD may improve depression status in this unique population.</p> <p>&nbsp;</p>

restrictedSep 2020View details →
zenodo12/100

data set from Van Bulck L, Luyckx K, Goossens E, Apers S, Kovacs AH, Thomet C, Budts W, Sluman MA, Eriksen K, Dellborg M, Berghammer M, Johansson B, Caruana M, Soufi A, Callus E, Moons P. Patient-reported outcomes of adults with congenital heart disease from eight European countries: scrutinising the association with healthcare system performance. Eur J Cardiovasc Nurs. 2019 Aug;18(6):465-473. doi: 10.1177/1474515119834484. Epub 2019 Feb 26. PMID: 30808198.

<p>Data set from the article Van Bulck L, Luyckx K, Goossens E, Apers S, Kovacs AH, Thomet C, Budts W, Sluman MA, Eriksen K, Dellborg M, Berghammer M, Johansson B, Caruana M, Soufi A, Callus E, Moons P. Patient-reported outcomes of adults with congenital heart disease from eight European countries: scrutinising the association with healthcare system performance. Eur J Cardiovasc Nurs. 2019 Aug;18(6):465-473. doi: 10.1177/1474515119834484. Epub 2019 Feb 26. PMID: 30808198.</p> <p>&nbsp;</p> <p>This is the abstract:</p> <p><strong>Background:&nbsp;</strong>Inter-country variation in patient-reported outcomes of adults with congenital heart disease has been observed. Country-specific characteristics may play a role. A previous study found an association between healthcare system performance and patient-reported outcomes. However, it remains unknown which specific components of the countries&#39; healthcare system performance are of importance for patient-reported outcomes.</p> <p><strong>Aims:&nbsp;</strong>The aim of this study was to investigate the relationship between components of healthcare system performance and patient-reported outcomes in a large sample of adults with congenital heart disease.</p> <p><strong>Methods:&nbsp;</strong>A total of 1591 adults with congenital heart disease (median age 34 years; 51% men; 32% simple, 48% moderate and 20% complex defects) from eight European countries were included in this cross-sectional study. The following patient-reported outcomes were measured: perceived physical and mental health, psychological distress, health behaviours and quality of life. The Euro Health Consumer Index 2015 and the Euro Heart Index 2016 were used as measures of healthcare system performance. General linear mixed models were conducted, adjusting for patient-specific variables and unmeasured country differences.</p> <p><strong>Results:&nbsp;</strong>Health risk behaviours were associated with the Euro Health Consumer Index subdomains about patient rights and information, health outcomes and financing and access to pharmaceuticals. Perceived physical health was associated with the Euro Health Consumer Index subdomain about prevention of chronic diseases. Subscales of the Euro Heart Index were not associated with patient-reported outcomes.</p> <p><strong>Conclusion:&nbsp;</strong>Several features of healthcare system performance are associated with perceived physical health and health risk behaviour in adults with congenital heart disease. Before recommendations for policy-makers and clinicians can be conducted, future research ought to investigate the impact of the healthcare system performance on outcomes further.</p> <p>&nbsp;</p>

restrictedSep 2020View details →
zenodo12/100

Data Set from Holbein CE, Peugh J, Veldtman GR, Apers S, Luyckx K, Kovacs AH, Thomet C, Budts W, Enomoto J, Sluman MA, Lu CW, Jackson JL, Khairy P, Cook SC, Chidambarathanu S, Alday L, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Soufi A, Fernandes SM, White K, Callus E, Kutty S, Moons P; APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Health behaviours reported by adults with congenital heart disease across 15 countries. Eur J Prev Cardiol. 2020 Jul;27(10):1077-1087. doi: 10.1177/2047487319876231. Epub 2019 Sep 17. PMID: 31529991.

<p>Data Set from Holbein CE, Peugh J, Veldtman GR, Apers S, Luyckx K, Kovacs AH, Thomet C, Budts W, Enomoto J, Sluman MA, Lu CW, Jackson JL, Khairy P, Cook SC, Chidambarathanu S, Alday L, Eriksen K, Dellborg M, Berghammer M, Johansson B, Mackie AS, Menahem S, Caruana M, Soufi A, Fernandes SM, White K, Callus E, Kutty S, Moons P; APPROACH-IS consortium and the International Society for Adult Congenital Heart Disease (ISACHD). Health behaviours reported by adults with congenital heart disease across 15 countries. Eur J Prev Cardiol. 2020 Jul;27(10):1077-1087. doi: 10.1177/2047487319876231. Epub 2019 Sep 17. PMID: 31529991.</p> <p>&nbsp;</p> <p>This is the abstract:</p> <p><strong>Background:&nbsp;</strong>Health behaviours are essential to maintain optimal health and reduce the risk of cardiovascular complications in adults with congenital heart disease. This study aimed to describe health behaviours in adults with congenital heart disease in 15 countries and to identify patient characteristics associated with optimal health behaviours in the international sample.</p> <p><strong>Design:&nbsp;</strong>This was a cross-sectional observational study.</p> <p><strong>Methods:&nbsp;</strong>Adults with congenital heart disease (<em>n</em>&nbsp;= 4028, median age = 32 years, interquartile range 25-42 years) completed self-report measures as part of the Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS). Participants reported on seven health behaviours using the Health Behaviors Scale-Congenital Heart Disease. Demographic and medical characteristics were assessed via medical chart review and self-report. Multivariate path analyses with inverse sampling weights were used to investigate study aims.</p> <p><strong>Results:&nbsp;</strong>Health behaviour rates for the full sample were 10% binge drinking, 12% cigarette smoking, 6% recreational drug use, 72% annual dental visit, 69% twice daily tooth brushing, 27% daily dental flossing and 43% sport participation. Pairwise comparisons indicated that rates differed between countries. Rates of substance use behaviours were higher in younger, male participants. Optimal dental health behaviours were more common among older, female participants with higher educational attainment while sports participation was more frequent among participants who were younger, male, married, employed/students, with higher educational attainment, less complex anatomical defects and better functional status.</p> <p><strong>Conclusions:&nbsp;</strong>Health behaviour rates vary by country. Predictors of health behaviours may reflect larger geographic trends. Our findings have implications for the development and implementation of programmes for the assessment and promotion of optimal health behaviours in adults with congenital heart disease.</p> <p>&nbsp;</p>

restrictedSep 2020View details →

ScienceDex guides

Understand access before you commit

These curated guides explain access requirements, typical timelines, costs, and reuse considerations for widely used research datasets.

Compare curated 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.

allen-brain-atlas
neuroscienceopenDocumentation, web resources, and API references are available online.
Last verified 2026-04-30Open record

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.

abode-home-cage
behavioral-neuroscienceopenThe DataShare record exposes download links for annotations, documentation, license text, and the zipped per-snippet data directory.
Last verified 2026-04-30Open record

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.

dandi-nwb
electrophysiologyopenPublished Dandiset metadata and archive endpoints are available through the production DANDI API.
Last verified 2026-04-30Open record

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.

ibl
behavioral-neuroscienceopenPublic sessions can be searched and loaded from the IBL public data server through ONE.
Last verified 2026-04-29Open record

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.

openneuro
neuroscienceopenPublished datasets are available on demand over the internet.
Last verified 2026-04-29Open record