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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3860449/

Collection of far reaching initiatives designed to transform research capabilities and improve translation of research into practice. Program consists of three major themes: new pathways to discovery, research teams of future, and reengineering clinical research enterprise.

Proper citation: NIH Roadmap (RRID:SCR_011465) Copy   

•   Source: SciCrunch Registry

http://www.childrennetwork.org/

Database of clinical information and serum and tissue samples from children across the United States and Canada with Biliary Atresia, Idiopathic Neonatal Hepatitis, Cystic Fibrosis Liver Disease, Alagille Syndrome, Alpha-1 Antitrypsin Deficiency, Bile Acid Synthesis Defects, Mitochondrial Hepatopathies, and Progressive Familial Intrahepatic Cholestasis in order to facilitate research and to perform clinical, epidemiological, and therapeutic trials in these important pediatric liver diseases. Three NIDDK-funded consortia, Biliary Atresia Research Consortium (BARC), Cholestatic Liver Disease Consortium (CLiC), and the Cystic Fibrosis Liver Disease (CFLD) Network were consolidated to form ChiLDREN. Most of the ChiLDREN studies are natural history studies aimed at acquiring information and data that will provide a better understanding of these rare conditions. Participants will be asked to allow study personnel to obtain information from medical records and an interview, and to collect blood, urine, and tissue samples when clinically indicated, in order to understand the causes of these diseases and to improve the diagnosis and treatment of children with these diseases. All of the information obtained in these studies is confidential and no names or identifying information are used in the study.

Proper citation: Childhood Liver Disease Research and Education Network (RRID:SCR_001497) Copy   

•   Source: SciCrunch Registry

https://proteomics.cancer.gov/programs/cptac

Clinical proteomic tumor analysis consortium to systematically identify proteins that derive from alterations in cancer genomes and related biological processes, in order to understand molecular basis of cancer that is not possible through genomics and to accelerate translation of molecular findings into clinic. Operates through Proteome Characterization Centers, Proteogenomic Translational Research Centers, and Proteogenomic Data Analysis Centers. CPTAC investigators collaborate, share data and expertise across consortium, and participate in consortium activities like developing standardized workflows for reproducible studies.

Proper citation: CPTAC (RRID:SCR_017135) Copy   

•   Source: SciCrunch Registry

https://github.com/HicServices/RDMP/wiki

Software toolkit which automates the loading, storage, linkage and provision of data sets. It also cleans, transforms and documents provenance meta-data and domain knowledge to make data sets “research ready”.

Proper citation: Research Data Management Platform (RRID:SCR_016268) Copy   

•   Source: SciCrunch Registry

https://sleepdata.org/

System for sharing sleep data. Organization portal that aggregates, harmonizes, and organizes sleep and clinical data from individuals studied as part of cohort studies or clinical trials and provides suite of tools to facilitate data exploration and data visualization. National Heart, Lung, and Blood Institute resource designed to provide big data resources to sleep research community.

Proper citation: National Sleep Research Resource (NSRR) (RRID:SCR_016576) Copy   

•   Source: SciCrunch Registry

https://github.com/qiicr/dcmqi

Software library to help with the conversion between imaging research formats and the standard DICOM representation for image analysis results. Used to implement conversion of the data stored in commonly used research formats into the standard DICOM representation. Available as a precompiled binary package for every major operating system, as a Docker image, and as an extension to 3D Slicer.

Proper citation: dcmqi (RRID:SCR_016933) Copy   

•   Source: SciCrunch Registry

http://sourceforge.net/projects/cnv-webstore

Integrated platform to analyse, store, visualise and interpret CopyNumber Variation data. Analysis is supported for Illumina data, all CNV-reports and raw data can be imported after third-party analysis. Platform to streamline processing and downstream interpretation of microarray data in clinical context. Analysis tools include CNV analysis, parent of origin and uniparental disomy detection. Interpretation tools include data visualisation, gene prioritisation, automated PubMed searching, linking data to several genome browsers and annotation of CNVs based on several public databases.

Proper citation: CNV webstore (RRID:SCR_018007) Copy   

•   Source: SciCrunch Registry

http://www.areds2.org

Study designed to assess the effects of oral supplementation of high doses of macular xanthophylls (lutein and zeaxanthin) and/or omega -3 LCPUFAs (DHA and EPA) for the treatment of AMD and cataract.

Proper citation: AREDS2: The Age-Related Eye Disease Study 2 (RRID:SCR_006306) Copy   

•   Source: SciCrunch Registry

https://www.researchmatch.org/

Free and secure registry to bring together two groups of people who are looking for one another: (1) people who are trying to find research studies, and (2) researchers who are looking for people to participate in their studies. It has been developed by major academic institutions across the country who want to involve you in the mission of helping today''''s studies make a real difference for everyone''''s health in the future. Anyone can join ResearchMatch. Many studies are looking for healthy people of all ages, while some are looking for people with specific health conditions. ResearchMatch can help ''''match'''' you with any type of research study, ranging from surveys to clinical trials, always giving you the choice to decide what studies may interest you.

Proper citation: ResearchMatch (RRID:SCR_006387) Copy   

•   Source: SciCrunch Registry

http://www.endo-society.org/

Founded in 1916, The Endocrine Society is the world''s oldest, largest, and most active organization devoted to research on hormones and the clinical practice of endocrinology. The Society works to foster a greater understanding of endocrinology amongst the general public and practitioners of complementary medical disciplines and to promote the interests of all endocrinologists at the national scientific research and health policy levels of government. The Endocrine Society publishes four world-renowned journals and a monthly news magazine, holds scientific conferences, provides educational programs for physicians, issues clinical practice guidelines, promotes careers in endocrinology, and advocates for appropriate funding of scientific research in endocrinology and public policies that support the practice of clinical endocrinology. The Hormone Health Network, the Society''s public education affiliate, is a leading source of hormone-related health information for the public, physicians, allied health professionals and the media. The Endocrine Society is an international body with more than 15,000 members from over 100 countries. The Society''s diverse membership represents medicine, molecular and cellular biology, biochemistry, physiology, genetics, immunology, education, industry and allied health fields. Members of The Endocrine Society represent the full range of disciplines associated with endocrinologists: clinicians, researchers, educators, fellows and students, industry professionals and health professionals who are involved in the field of endocrinology. These professionals are dedicated to the research and treatment of the full range of endocrine disorders: diabetes, reproduction, infertility, osteoporosis, thyroid disease, obesity/lipids, growth hormone, pituitary tumors, and adrenal insufficiency.

Proper citation: Endocrine Society (RRID:SCR_006449) Copy   

•   Source: SciCrunch Registry

http://www.progenygenetics.com/

Fully customizable, comprehensive genetic pedigree and clinical data management software including a multi-user relational database with an integrated pedigree drawing component to manage genetic and pedigree data in one database. Manage Pedigrees, Individuals, SNPs, STRs, Samples, Plates, Genotypes and exports to multiple analysis platforms. (entry from Genetic Analysis Software) * LIMS software, providing advanced sample tracking and management (including functionality to generate and record barcodes) and configurable workflows for your specific environment. * Full genotype management gives users the ability to track not only family-based studies, but Whole Genome Association studies containing 1000''s of samples with large arrays.

Proper citation: PROGENY (RRID:SCR_006647) Copy   

•   Source: SciCrunch Registry

http://www.medschool.lsuhsc.edu/epilepsy_center/

The LSU Epilepsy Center of Excellence is dedicated to providing state-of-the-art, comprehensive epilepsy treatment, enhancing access to epilepsy education for patients and physicians, and promoting multidisciplinary epilepsy research in pharmacology, neuroelectrophysiology, neuroimaging, neurosurgery, neuropsychology, biomedical engineering and public health. The center''s team of professionals offers diagnostic and presurgical monitoring, the strategic use of antiepileptic medications, specialized epilepsy neuroimaging, vagus nerve stimulator implantation, ketogenic diet management, neuropsychological testing, psychiatric support and epilepsy surgery for adults and children. The Center also hosts several clinical research trials each year for investigational medications and devices. The following are the treatment methods currently available at this center: - Epilepsy Brain Implants - Responsive Neurostimulator (RNS) - Medications - Medication blood level monitoring - Vagus Nerve Stimulators (VNS) - Epilepsy Surgery - Ketogenic Diet - Psychiatric Services - Radiosurgery Epilepsy Center Sections: *Electrophysiology *Neuroimaging *Neuropsychology *Neuroscience *Neurosurgery *Pharmacology *Psychiatry *Research

Proper citation: Louisiana State University School of Medicine, Health Sciences Center: Epilepsy Center (RRID:SCR_006519) Copy   

•   Source: SciCrunch Registry

http://www.cdc.gov/osels/lspppo/Genetic_Testing_Quality_Practices/Nex-StoCT.html

National workgroup to define platform-independent approaches for establishing technical process elements of a quality management system (QMS) to assure the analytical validity and compliance of next-generation sequencing (NGS) tests with existing regulatory and professional quality standards. The workgroup identified and addressed gaps in quality practices that could compromise the quality of both clinical laboratory services and translational efforts needed to advance the implementation and utility of NGS in clinical settings. The workgroup was composed of experts with knowledge of and experience with NGS and included clinical laboratory directors, clinicians, platform and software developers and informaticians, as well as individuals actively engaged in NGS guideline development from accreditation bodies and professional organizations. Representatives from US government agencies also participated. These guidelines address four topics that are components of quality management in a clinical environment: (i) test validation, (ii) quality control (QC) procedures to assure and maintain accurate test results, (iii) the independent assessment of test performance through proficiency testing (PT) or alternative approaches and (iv) reference materials (RMs). Discussions were limited to the analytic and informatics processes required for accurate variant calling. The workgroup did not address how variants are prioritized, interpreted or reported.

Proper citation: Nex-StoCT (RRID:SCR_006777) Copy   

•   Source: SciCrunch Registry

http://btris.nih.gov

Provides NIH clinical investigators with access to identifiable data for the subjects on their own active protocols, while providing all NIH investigators with access to de-identified data across all protocols. BTRIS provides users with advanced search, filtering, and aggregation methods to create data sets to support ongoing studies and stimulate ideas for new research. BTRIS is two distinct but interrelated applications, BTRIS Data Access and BTRIS Preferences. * BTRIS Data Access is the data repository where principal investigators or their designee create reports on their active protocols with identified subject data. Reports include the IRB Inclusion Enrollment Report, demographics, patient lists, laboratory and microbiology results, vital signs, medication orders and administration, diagnoses, and radiology reports (with links to images in the CC PACS system). * BTRIS Preferences is a Web based application that allows principal investigators or their designees to verify subject enrollment in their protocol(s). This ensures that reports created in BTRIS Data Access include all subjects. It also allows the principal investigator to designate an alternate investigator from the protocol to manage subject enrollment and create reports in BTRIS Data Access. BTRIS contains subject data from CRIS/MIS (the Clinical Center Medical Information Systems) and research data from NIAID (Crimson), NIAAA, and NCI. Data are available from 1976 to the present.

Proper citation: BTRIS: NIH Biomedical Translational Research Information System (RRID:SCR_006838) Copy   

•   Source: SciCrunch Registry

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

Clinical trial investigating whether a specific class of antihypertensive drugs (beta-adrenergic blockers, calcium channel blockers, or angiotensin converting enzyme inhibitors) and/or the level of blood pressure would influence progression of hypertensive kidney disease in African Americans. The initiative consisting of 21 clinical centers and a data-coordinating center is followed by a Continuation of AASK Cohort Study to investigate the environmental, socio-economic, genetic, physiologic, and other co-morbid factors that influence progression of kidney disease in a well-characterized cohort of African Americans with hypertensive kidney disease. Only patients who were previously in the randomized trial are eligible for the cohort study. A significant discovery was made in the treatment strategy for slowing kidney disease caused by hypertension. Angiotensin-converting enzyme (ACE) inhibitors, compared with calcium channel blockers, were found to slow kidney disease progression by 36 percent, and they drastically reduced the risk of kidney failure by 48 percent in patients who had at least one gram of protein in the urine, a sign of kidney failure. ACE inhibitors have been the preferred treatment for hypertension caused by diabetes since 1994; however, calcium channel blockers have been particularly effective in controlling blood pressure in African Americans. The AASK study now recommends ACE inhibitors to protect the kidneys from the damaging effects of hypertension. The Continuation of AASK Cohort Study will be followed at the clinical centers. The patients will be provided with the usual clinical care given to all such patients at the respective centers. Baseline demographic information, selected laboratory tests, and other studies are being obtained at the initiation of the Continuation Study. The patients will be seen quarterly at the centers, and some selected studies done at these visits. Samples will be obtained and stored for additional studies and analyses at a later date.

Proper citation: AASK Clinical Trial and Cohort Study (RRID:SCR_006985) Copy   

•   Source: SciCrunch Registry

http://www.oas.samhsa.gov/nsduh.htm

NSDUH is the primary source of statistical information on the use of illegal drugs, alcohol, and tobacco by the U.S. civilian, noninstitutionalized population aged 12 or older. Conducted by the Federal Government since 1971, the survey collects data through face-to-face interviews with a representative sample of the population at the respondent''s place of residence. Correlates in OAS reports include the following: age, gender, pregnancy status, race / ethnicity, education, employment, geographic area, frequency of use, and association with alcohol, tobacco, & illegal drug use. NSDUH collects information from residents of households and noninstitutional group quarters (e.g., shelters, rooming houses, dormitories) and from civilians living on military bases. The survey excludes homeless persons who do not use shelters, military personnel on active duty, and residents of institutional group quarters, such as jails and hospitals. Most of the questions are administered with audio computer-assisted self-interviewing (ACASI). ACASI is designed to provide the respondent with a highly private and confidential mode for responding to questions in order to increase the level of honest reporting of illicit drug use and other sensitive behaviors. Less sensitive items are administered by interviewers using computer-assisted personal interviewing (CAPI). The 2010 NSDUH employed a State-based design with an independent, multistage area probability sample within each State and the District of Columbia. The eight States with the largest population (which together account for about half of the total U.S. population aged 12 or older) were designated as large sample States (California, Florida, Illinois, Michigan, New York, Ohio, Pennsylvania, and Texas) and had a sample size of about 3,600 each. For the remaining 42 States and the District of Columbia, the sample size was about 900 per State. The design oversampled youths and young adults; each State''s sample was approximately equally distributed among three age groups: 12 to 17 years, 18 to 25 years, and 26 years or older.

Proper citation: National Survey on Drug Use and Health (RRID:SCR_007031) Copy   

•   Source: SciCrunch Registry

http://selectscience.net

SelectScience.net is a leading online resource for applied chemists, clinical chemists and life scientists. It provides up-to-date product and industry news, an extensive product directory and end-user product reviews, as well as the ability for visitors to review the products they use. Scientists can also use the site to search for jobs, application notes and scientific conferences. Sponsors: The company is run by independent scientists and funded from Government and Corporate sponsorship.

Proper citation: SelectScience (RRID:SCR_002733) Copy   

•   Source: SciCrunch Registry

http://www.cpdd.vcu.edu/

The College on Problems of Drug Dependence (CPDD) is an interdisciplinary research society whose members address problems of drug dependence in the broadest range of scientific disciplines, including chemistry, basic biology, pharmacology, behavioral science, clinical research, sociology, psychology, anthropology, and history. CPDD serves as an interface among governmental, industrial and academic communities maintaining liaisons with regulatory and research agencies as well as educational, treatment, and prevention facilities in the drug abuse field. It also functions as a collaborating center of the World Health Organization. The Annual Scientific Meeting: Since 1938, a major focus of the CPDD's activities has been its sponsorship of an annual scientific meeting. This conference serves as a forum bringing together basic scientists and clinical investigators from industry, academia, and government. Representatives of regulatory agencies, as well as scientists and professionals in a number of diverse disciplines interested in the biochemical, behavioral, and public health aspects of drug dependence participate. Special Conferences: Periodically, the College sponsors conferences focused on timely topics of interest to researchers, government, industry, and the public. In recent years, CPDD has organized meetings on Abuse Liability Assessment of CNS Drugs; Drug Formulation and Abuse Liability; Pre-Clinical Abuse Liability Testing; Women and Smoking: Understanding Socioeconomic Influences; and Risk Management and Post-Marketing Surveillance for CNS-Acting Drugs. Consultation Activities: The CPDD provides consulting expertise in the area of epidemiology, treatment, prevention, and all the basic and clinical sciences related to drug dependence, drug abuse, and their behavioral and medical consequences. Sponsorship of Drug and Alcohol Dependence: The CPDD sponsors the journal Drug and Alcohol Dependence, published by Elsevier. A principal goal of the journal is to provide a source of quality, timely reports of scientific advances in substance abuse research. The journal is international in scope and interdisciplinary in coverage. The CPDD invites contributors. Donations Tax-deductible donations can be made to CPDD to support the Annual Scientific Meeting, testing facilities, drug assessment activities and Awards for Excellence.

Proper citation: College on Problems of Drug Dependence (RRID:SCR_002618) Copy   

•   Source: SciCrunch Registry

http://www.wanprc.org/

Center that aims to provide an environment to support biomedical research directed towards human health issues and nonhuman primate health and biology. To meet this mission, the WaNPRC supports biomedical research activities, professional research staff, specifically bred and maintained nonhuman primate colonies, and dedicated facilities and equipment required for nonhuman primate research protocols.

Proper citation: Washington National Primate Research Center (RRID:SCR_002761) Copy   

•   Source: SciCrunch Registry

http://www.mrc-cbu.cam.ac.uk/Imaging

Portal where neuroimaging studies are carried out using a Siemens 3T Tim Trio Magnetic Resonance Imaging (or MRI) scanner that is wholly dedicated to studies in Cognitive Neuroscience. From emotions and memories to language and learning, functional neuroimaging is being applied in many different areas of Cognitive Neuroscience. In many cases, this research relies upon support from healthy volunteers although neuroimaging studies are also being conducted in various clinical populations, including depression, anxiety, Parkinson's disease and Alzheimer's disease.

Proper citation: CBU Imaging Wiki (RRID:SCR_003014) Copy   

•   Source: SciCrunch Registry