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http://c-path.org/programs/cfast/

Consortium establishing data standards, tools and methods for conducting research in therapeutic areas important to public health including Alzheimer's disease, Parkinson's disease, multiple sclerosis, polycystic kidney disease, and tuberculosis.CDISC and C-Path have agreed to discontinue using separate CFAST brand, but they both remain committed to this mission and continue to partner to develop and publish therapeutic area data standards.

Proper citation: Coalition For Accelerating Standards and Therapies (RRID:SCR_000206) Copy   

•   Source: SciCrunch Registry

http://code.google.com/p/neurological-disease-ontology/

An ontology for the representation of the range of clinical and basic science aspects of neurological diseases. ND has a broad scope that includes neurological diseases as well as their associated signs, symptoms, diagnoses, pathologies, etiologies, processes, treatments, and any other aspect of a neurological disease that is or can be encountered in the course of clinical practice or medical research. ND is being built in accordance with the OBO Foundry principles. It is an extension of the Ontology for General Medical Science (OGMS) as well as the Basic Formal Ontology (BFO). ND aims to develop classes utilizing both textual and axiomatized definitions to describe and formalize relations between instances of classes both within the ontology itself as well as between ND and external ontologies such as the: Gene Ontology (GO), Cell Ontology (CL), Protein Ontology (PRO), Chemical Entities of Biological Interest (ChEBI), and Ontology for Biomedical Investigations (OBI).

Proper citation: Neurological disease ontology (RRID:SCR_010284) Copy   

•   Source: SciCrunch Registry

http://cahub.cancer.gov/about/

THIS RESOURCE IS NO LONGER IN SERVICE. Documented July 5, 2018. A national center for biospecimen science and standards to advance cancer research and treatment. It was created in response to the critical and growing need for high-quality, well-documented biospecimens for cancer research. The initiative builds on resources already developed by the NCI, including the Biospecimen Research Network and the NCI Best Practices for Biospecimen Resources, both of which were developed to address challenges around standardization of the collection and dissemination of quality biospecimens. caHUB will develop the infrastructure for collaborative biospecimen research and the production of evidence-based biospecimen standard operating procedures.

Proper citation: caHUB (RRID:SCR_009657) Copy   

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http://code.google.com/p/ogms/

An ontology based on the papers Toward an Ontological Treatment of Disease and Diagnosis and On Carcinomas and Other Pathological Entities to address some of the issues raised at the Workshop on Ontology of Diseases (Dallas, TX) and the Signs, Symptoms, and Findings Workshop (Milan, Italy). OGMS was formerly called the clinical phenotype ontology. Terms from OGMS hang from the Basic Formal Ontology.

Proper citation: Ontology for General Medical Science (RRID:SCR_010384) Copy   

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http://www.rad.upenn.edu/sbia/

THIS RESOURCE IS NO LONGER IN SERVICE. Documented on June 2, 2023. A section of the Penn department of radiology, it is devoted to the development of computer-based image analysis methods and their application to clinical research studies. Image analysis methodologies include image registration, segmentation, population-based statistical analysis, biophysical modeling of anatomical deformations, and high-dimensional pattern classification. Clinical research studies spans a variety of clinical areas and organs, and they include brain diseases such as Alzheimer's disease and schizophrenia, evaluation of treatment effects in large clinical trials, diagnosis of cardiac diseases, and diagnosis prostate, breast and brain cancer. SBIA also performs small animal imaging research aiming to understand brain development in mouse models. It has multiple resources which can be accessed by researcher.

Proper citation: SBIA (RRID:SCR_013628) Copy   

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https://www.stanleygenomics.org/

The Stanley Online Genomics Database uses samples from the Stanley Medical Research Institute (SMRI) Brain Bank. These samples were processed and run on gene expression arrays by a variety of researchers in collaboration with the SMRI. These researchers have performed analyses on their respective studies using a range of analytic approaches. All of the genomic data have been aggregated in this online database, and a consistent set of analyses have been applied to each study. Additionally, a comprehensive set of cross-study analyses have been performed. A thorough collection of gene expression summaries are provided, inclusive of patient demographics, disease subclasses, regulated biological pathways, and functional classifications. Raw data is also available to download. The database is derived from two sets of brain samples, the Stanley Array collection and the Stanley Consortium collection. The Stanley Array collection contains 105 patients, and the Stanley Consortium collection contains 60 patients. Multiple genomic studies have been conducted using these brain samples. From these studies, twelve were selected for inclusion in the database on the basis of number of patients studied, genomic platform used, and data quality. The Consortium collection studies have fewer patients but more diversity in brain regions and array platforms, while the Array collection studies are more homogenous. There are tradeoffs, the Consortium results will be more variable, but findings may be more broadly representative. The collections contain brain samples from subjects in four main groups: Bipolar Schizophrenia, Depression, and Controls Brain regions used in the studies include: Broadman Area 6, Broadman Area 8/9, Broadman Area 10, Broadman Area 46, Cerebellum The 12 studies encompass a range of microarray platforms: Affymetrix HG-U95Av2, Affymetrix HG-U133A, Affymetrix HG-U133 2.0+, Codelink Human 20K, Agilent Human I, Custom cDNA Publications based on any of the clinical or genomic data should credit the Stanley Medical Research Institute, as well as any individual SMRI collaborators whose data is being used. Publications which make use of analytic results/methods in the database should additionally cite Dr. Michael Elashoff. Registration is required to access the data.

Proper citation: Stanley Medical Research Institute Online Genomics Database (RRID:SCR_004859) Copy   

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http://nif-apps1.crbs.ucsd.edu/smabiomarkers/

THIS RESOURCE IS NO LONGER IN SERVICE. Documented on January 11, 2023. A publicly available tool that contains data from the BforSMA clinical study ( ClinicalTrials.gov, NCT00756821 ), a pilot study to identify candidate biomarkers in blood or urine from a wide range of Spinal Muscular Atrophy (SMA) patients that associate with disease severity. It is hoped that the identification of candidate biomarkers will lead to clinical efficacy and longitudinal natural history studies to verify these markers and enable their use as validated pharmacodynamic markers, longitudinal progression markers, or surrogate endpoint measures in clinical trials.

Proper citation: BioMarkers for SMA Data Portal (RRID:SCR_004920) Copy   

•   Source: SciCrunch Registry

https://scicrunch.org/scicrunch/data/source/nlx_154697-5/search?q=*

A virtual database currently indexing clinical trials databases including EU Clinical Trials Register and Clinicaltrials.gov.

Proper citation: Integrated Clinical Trials (RRID:SCR_005969) Copy   

•   Source: SciCrunch Registry

http://theness.com/neurologicablog/

A blog by the accomplished Yale Neurologist Steven Novella, MD, covering news and issues in neuroscience, but also general science, scientific skepticism, philosophy of science, critical thinking, and the intersection of science with the media and society. Dr. Novella is an academic clinical neurologist at Yale University School of Medicine. He is the president and co-founder of the New England Skeptical Society. He is the host and producer of the popular weekly science podcast, The Skeptics'' Guide to the Universe. He is also a senior fellow and Director of Science-Based Medicine at the James Randi Educational Foundation (JREF), a fellow of the Committee for Skeptical Inquiry (CSI) and a founding fellow of the Institute for Science in Medicine. Dr. Novella also contributes every Sunday to The Rogues Gallery, the official blog of the SGU, every Monday to SkepticBlog, and every Wednesday to Science-Based Medicine, a blog dedicated to issues of science and medicine.

Proper citation: NeuroLogica Blog (RRID:SCR_006229) Copy   

•   Source: SciCrunch Registry

http://www.mappd.org/

A database of experimental behavioral data from > 170 aphasia patients who exhibited language impairments secondary to chronic left hemisphere stroke. The core of the database is individual-trial performance data from picture naming. Picture naming is a primary test of lexical processing. The task taps a critical juncture in the language system because naming mediates between high-level conceptual and syntactic processing and low-level phonological processing. Difficulty in this task is present to varying degrees in nearly all aphasic individuals. This site allows researchers to search through naming data from over 170 patients. Searches can narrow in on data subsets based on patient characteristics (e.g. time since aphasia onset, clinical diagnosis), stimulus characteristics (e.g. semantic category, lexical frequency) and task performance (e.g. error type). The data available on this site can be used to test hypotheses about naming impairment and aphasic impairment generally. Once the basic analysis tools of the site are exhausted, users can export the raw data for further analysis and visualization. The web database represents years of data collection. Most were recruited to the research program at Moss Rehabilitation Research Institute (MRRI).

Proper citation: Moss Aphasia Psycholinguistics Project Database (RRID:SCR_006265) Copy   

•   Source: SciCrunch Registry

http://www.ncbi.nlm.nih.gov/books/NBK1116/

Provides clinically relevant and medically actionable information for inherited conditions in standardized journal-style format, covering diagnosis, management, and genetic counseling for patients and their families. Searchable book of expert-authored, peer-reviewed disease descriptions presented in standardized format and focused on clinically relevant and medically actionable information on diagnosis, management, and genetic counseling of patients and families with specific inherited conditions.

Proper citation: GeneReviews (RRID:SCR_006560) Copy   

•   Source: SciCrunch Registry

http://psychologycorner.com/

A blog by a Romanian clinical psychologist and psychotherapist Lucia Grosaru. Major categories include: General, lifestyle, news, pensees, psychologists, psychotherapy, self-help and video. Lucia Grosaru is the President and a Founding Member of the Romanian Institute Sic Cogito, Founding Member for The Romanian Center of Psychology and a Founding Editor of The Romanian Journal of Psychology, Psychotherapy and Neuroscience. Lucia is an integrative psychotherapist, clinical psychologist and a Certified Rorschach Inkblot Test Specialist (Method: Scuola Romana Rorschach, Italy). She has graduated the Psychology and Educational Science Faculty at the University of Bucharest in 2008 and the Cognitive Psychodiagnosis and Counseling Master's Programme in 2010.

Proper citation: Psychology Corner (RRID:SCR_000630) Copy   

•   Source: SciCrunch Registry

http://archives.niddk.nih.gov/patient/crisp/rp-crisp.aspx

A five-year prospective cohort study following 240 patients who have autosomal-dominant polycystic kidney disease (PKD) to determine whether changes in anatomic characteristics of their kidneys as measured by magnetic resonance imaging will be useful in providing surrogate measures for disease progression. CRISP's overall goal is to develop methods that would facilitate shortening the observation period necessary to determine efficacy of treatment interventions in PKD patients. Specific goals of this study are to: * Quantify cyst growth and ascertain severity of renal parenchymal involvement by sequential measurement of total kidney volume and the ratio of intact parenchyma to renal parenchyma occupied by cysts over time * Establish useful clinical correlations of imaging data with other markers of disease progression * Identify and test other potential markers or indices of disease progression, for example, assessment of loss of heterozygosity of renal cells shed in the urine, or other markers, in cohorts of patients with PKD * Gain information about the cost-effectiveness, patient acceptability, and advantages and disadvantages of different imaging techniques used serially in patients with PKD. Some experience has been gained in establishing that repeat imaging of the same PKD patient, using these techniques, yields reproducible estimates of kidney size and the proportion of renal parenchyma occupied by cysts. MRI may also have the advantage of permitting simultaneous estimation of GFR. Ultrasound has the advantage of being more cost-effective and perhaps more acceptable to patients for repetitive studies, but the measurements may be less accurate and reproducible. Nonetheless, there is very limited experience in applying these techniques to follow progression of the renal disease. Development of improved, reproducible imaging methods that assess cyst growth and provide markers of disease progression could markedly improve the feasibility of clinical trials. Participating clinical centers are Emory University, the Mayo Clinic, University of Kansas, and the University of Alabama at Birmingham. The data coordinating and imaging analysis center is at Washington University. (PI has since moved to University of Pittsburgh) The study found that kidney enlargement resulting from the expansion of cysts is continuous, quantifiable, and associated with the decline of renal function. Cystic expansion occurs at a consistent rate per individual, although it is heterogeneous in the population, and that larger kidneys are associated with more rapid decrease in renal function. These anatomic characteristics of patient kidneys may provide useful surrogate measures for disease progression, and hence enhance the development of targeted therapies for autosomal dominant PKD. CRISP III is a five-year prospective cohort study to follow ~170 remaining autosomal dominant polycystic kidney disease (ADPKD) patients who were part of the original CRISP cohort study. CRISP III will verify and extend the preliminary observations of CRISP to determine the extent to which quantitative (kidney volume and blood flow, and hepatic and kidney cyst volume) or qualitative (cyst distribution and character) structural parameters predict renal insufficiency and develop and test new metrics to quantify and monitor disease progression. Urine metabolites and the genome will be correlated with the progression of disease to look for new, predictive disease biomarkers. This information from CRISP III will help determine if the kidney enlargement, blood flow, cyst distribution, or urine metabolites can function as an informative surrogate measure for disease progression.

Proper citation: Consortium for Radiologic Imaging Studies of Polycystic Kidney Disease (RRID:SCR_000690) Copy   

•   Source: SciCrunch Registry

https://www.lookaheadtrial.org

16-center, randomized clinical trial investigating the long-term health consequences of an intensive lifestyle intervention program designed to achieve and maintain weight loss by decreased caloric intake and increased physical activity in overweight volunteers with type 2 diabetes. The Look AHEAD cohort comprises approximately 5,000 overweight or obese participants with type 2 diabetes, aged 45-76. Participants were randomized to one of two interventions: an intensive lifestyle intervention designed to produce and sustain weight loss over the long term or a diabetes support and education arm. Participants will be followed for a total of 11 to 13.5 years from randomization. The primary hypothesis is that the incidence rate of the first post-randomization occurrence of a composite outcome, which includes * cardiovascular death (including fatal myocardial infarction and stroke), * non-fatal myocardial infarction, * hospitalized angina, and * non-fatal stroke, over a planned follow-up period of up to 13.5 years will be reduced among participants assigned to the Lifestyle Intervention compared to those assigned to the control condition, Diabetes Support and Education. Look AHEAD will also test for reductions in the incidence of three secondary composite outcomes and examine the effect of the intervention on cardiovascular disease risk factors, diabetes control and complications, general health, and quality of life, and psychological outcomes. The cost and cost-effectiveness of the Lifestyle Intervention relative to Diabetes Support and Education will be assessed. The Look AHEAD intensive lifestyle intervention ended September, 2012. Participants continue to be followed to determine the long-term effects of the intervention on health outcomes.

Proper citation: Look AHEAD (RRID:SCR_001490) Copy   

•   Source: SciCrunch Registry

http://cph.georgetown.edu/taiwan.html

Data sets of information regarding the health and well-being of older persons in Taiwan (from 2000 and 2006), in particular the relationship between life challenges and mental and physical health, the impact of social environment on the health and well-being of the elderly, and biological markers of health and stress. The study collected self-reports of physical, psychological, and social well-being, plus extensive clinical data based on medical examinations and laboratory analyses. Examination of health outcomes included chronic illnesses, functional status, psychological well-being, and cognitive function. Questions regarding life challenges focused on perceived stress, economic difficulties, security and safety, and the consequences of a major earthquake. Biological markers were used to identify cardiovascular risk factors, metabolic process measures, immune-system activity, the hypothalamic-pituitary adrenal axis, and sympathetic nervous system activity. The study design consists of face-to-face interviews with participants drawn from a random sub-sample of participants from 27 PSUs from the 1999 Survey of Health and Living Status of the Middle Aged and Elderly in Taiwan. Hospital visits and blood and urine specimens also were collected. A second wave of SEBAS was conducted in 2006 using a similar protocol to SEBAS 2000, but with the addition of performance assessments conducted by the interviewers at the end of the home interview. * Dates of Study: -2000, 2006 * Study Features: Longitudinal, International, Anthropometric Measures * Sample Size: 27 PSUs

Proper citation: Social Environment and Biomarkers of Aging Study in Taiwan (RRID:SCR_003704) Copy   

•   Source: SciCrunch Registry

http://www.orgids.com/

Data sets resulting from glaucoma research including visual fields, various imaging modalities and other data from both glaucomatous and normal subjects. The Longitudinal Glaucomatous Visual Fields data set contains IOP (Intraocular pressure) measurements and 24-2 Full Threshold visual fields obtained with a Humphrey Field Analyzer (Zeiss). Data of both eyes of 139 patients over a mean period of over 9 years is included, with on average more than 17 fields per eye. Local threshold and total deviation values are included.

Proper citation: Open Rotterdam Glaucoma Imaging Data Sets (RRID:SCR_003540) Copy   

•   Source: SciCrunch Registry

http://www.hgvs.org/dblist/dblist.html

A list of various databases freely available to the public, including several mutation and variation resources, such as education resources for teachers students provided by the Human Genome Variation Society. Databases listed include: * Locus Specific Mutation Databases * Disease Centered Central Mutation Databases * Central Mutation and SNP Databases * National and Ethnic Mutation Databases * Mitochondrial Mutation Databases * Chromosomal Variation Databases * Other Mutation Databases ( i.e. your round holes don''''t fit our square pegs) * Clinical and Patient Aspects Databases * Non Human Mutation Databases * Artificial Mutations Only * Other Related Databases * Education Resources for Teachers and Students

Proper citation: Human Genome Variation Society: Databases and Other Tools (RRID:SCR_006876) Copy   

•   Source: SciCrunch Registry

http://clinicaltrials.gov/ct2/show/NCT00688662

A prospective, double-blind, randomized, sham-controlled, multi-center clinical trial that enrolls subjects who have received a prior cholecystectomy and are diagnosed with the clinical syndrome of Sphincter of Oddi Dysfunction III (SOD III) as defined by the Rome III criteria. The goal of the study is to asses the value of endoscopic sphincterotomy as a treatment for adult subjects categorized as SOD III suffering from pain after cholecystectomy and to define the role of manometry in treating these patients.

Proper citation: Evaluating Predictors and Interventions in Sphincter of Oddi Dysfunction (RRID:SCR_006897) Copy   

•   Source: SciCrunch Registry

http://archives.niddk.nih.gov/patient/mist/mist.aspx

Randomized clinical trial to determine the efficacy and safety of three treatments for benign prostatic hyperplasia (BPH): transurethral needle ablation (TUNA), transurethral microwave therapy (TUMT), and medical therapy with alfuzosin and finasteride. The study has been terminated. (Inability to recruit required sample size.)

Proper citation: Minimally Invasive Surgical Therapies Treatment Consortium for Benign Prostatic Hyperplasia (RRID:SCR_007126) Copy   

•   Source: SciCrunch Registry

http://bioinfo-out.curie.fr/ittaca/

THIS RESOURCE IS NO LONGER IN SERVICE, documented on 6/12/25. ITTACA is a database created for Integrated Tumor Transcriptome Array and Clinical data Analysis. ITTACA centralizes public datasets containing both gene expression and clinical data and currently focuses on the types of cancer that are of particular interest to the Institut Curie: breast carcinoma, bladder carcinoma, and uveal melanoma. ITTACA is developed by the Institut Curie Bioinformatics group and the Molecular Oncology group of UMR144 CNRS/Institut Curie. A web interface allows users to carry out different class comparison analyses, including comparison of expression distribution profiles, tests for differential expression, patient survival analyses, and users can define their own patient groups according to clinical data or gene expression levels. The different functionalities implemented in ITTACA are: - To test if one or more gene, of your choice, is differentially expressed between two groups of samples exhibiting distinct phenotypes (Student and Wilcoxon tests). - The detection of genes differentially expressed (Significance Analysis of Microarrays) between two groups of samples. - The creation of histograms which represent the expression level according to a clinical parameter for each sample. - The computation of Kaplan Meier survival curves for each group. ITTACA has been developed to be a useful tool for comparing personal results to the existing results in the field of transcriptome studies with microarrays.

Proper citation: Integrated Tumor Transcriptome Array and Clinical data Analysis (RRID:SCR_008182) Copy   

•   Source: SciCrunch Registry