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http://www.commondataelements.ninds.nih.gov

The purpose of the NINDS Common Data Elements (CDEs) Project is to standardize the collection of investigational data in order to facilitate comparison of results across studies and more effectively aggregate information into significant metadata results. The goal of the National Institute of Neurological Disorders and Stroke (NINDS) CDE Project specifically is to develop data standards for clinical research within the neurological community. Central to this Project is the creation of common definitions and data sets so that information (data) is consistently captured and recorded across studies. To harmonize data collected from clinical studies, the NINDS Office of Clinical Research is spearheading the effort to develop CDEs in neuroscience. This Web site outlines these data standards and provides accompanying tools to help investigators and research teams collect and record standardized clinical data. The Institute still encourages creativity and uniqueness by allowing investigators to independently identify and add their own critical variables. The CDEs have been identified through review of the documentation of numerous studies funded by NINDS, review of the literature and regulatory requirements, and review of other Institute''s common data efforts. Other data standards such as those of the Clinical Data Interchange Standards Consortium (CDISC), the Clinical Data Acquisition Standards Harmonization (CDASH) Initiative, ClinicalTrials.gov, the NINDS Genetics Repository, and the NIH Roadmap efforts have also been followed to ensure that the NINDS CDEs are comprehensive and as compatible as possible with those standards. CDEs now available: * General (CDEs that cross diseases) Updated Feb. 2011! * Congenital Muscular Dystrophy * Epilepsy (Updated Sept 2011) * Friedreich''s Ataxia * Parkinson''s Disease * Spinal Cord Injury * Stroke * Traumatic Brain Injury CDEs in development: * Amyotrophic Lateral Sclerosis (Public review Sept 15 through Nov 15) * Frontotemporal Dementia * Headache * Huntington''s Disease * Multiple Sclerosis * Neuromuscular Diseases ** Adult and pediatric working groups are being finalized and these groups will focus on: Duchenne Muscular Dystrophy, Facioscapulohumeral Muscular Dystrophy, Myasthenia Gravis, Myotonic Dystrophy, and Spinal Muscular Atrophy The following tools are available through this portal: * CDE Catalog - includes the universe of all CDEs. Users are able to search the full universe to isolate a subset of the CDEs (e.g., all stroke-specific CDEs, all pediatric epilepsy CDEs, etc.) and download details about those CDEs. * CRF Library - (a.k.a., Library of Case Report Form Modules and Guidelines) contains all the CRF Modules that have been created through the NINDS CDE Project as well as various guideline documents. Users are able to search the library to find CRF Modules and Guidelines of interest. * Form Builder - enables users to start the process of assembling a CRF or form by allowing them to choose the CDEs they would like to include on the form. This tool is intended to assist data managers and database developers to create data dictionaries for their study forms.

Proper citation: NINDS Common Data Elements (RRID:SCR_006577) Copy   

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http://www.autoimmunitycenters.org/

Nine centers that conduct clinical trials and basic research on new immune-based therapies for autoimmune diseases. This program enhances interactions between scientists and clinicians in order to accelerate the translation of research findings into medical applications. By promoting better coordination and communication, and enabling limited resources to be pooled, ACEs is one of NIAID''''s primary vehicles for both expanding our knowledge and improving our ability to effectively prevent and treat autoimmune diseases. This coordinated approach incorporates key recommendations of the NIH Autoimmune Diseases Research Plan and will ensure progress in identifying new and highly effective therapies for autoimmune diseases. ACEs is advancing the search for effective treatments through: * Diverse Autoimmunity Expertise Medical researchers at ACEs include rheumatologists, neurologists, gastroenterologists, and endocrinologists who are among the elite in their respective fields. * Strong Mechanistic Foundation ACEs augment each clinical trial with extensive basic studies designed to enhance understanding of the mechanisms responsible for tolerance initiation, maintenance, or loss, including the role of cytokines, regulatory T cells, and accessory cells, to name a few. * Streamlined Patient Recruitment The cooperative nature of ACEs helps scientists recruit patients from distinct geographical areas. The rigorous clinical and basic science approach of ACEs helps maintain a high level of treatment and analysis, enabling informative comparisons between patient groups.

Proper citation: Autoimmunity Centers of Excellence (RRID:SCR_006510) Copy   

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https://repository.niddk.nih.gov/home/

NIDDK Central Repositories are two separate contract funded components that work together to store data and samples from significant, NIDDK funded studies. First component is Biorepository that gathers, stores, and distributes biological samples from studies. Biorepository works with investigators in new and ongoing studies as realtime storage facility for archival samples.Second component is Data Repository that gathers, stores and distributes incremental or finished datasets from NIDDK funded studies Data Repository helps active data coordinating centers prepare databases and incremental datasets for archiving and for carrying out restricted queries of stored databases. Data Repository serves as Data Coordinating Center and website manager for NIDDK Central Repositories website.

Proper citation: NIDDK Central Repository (RRID:SCR_006542) Copy   

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http://projectreporter.nih.gov/project_info_description.cfm?aid=8661937&icde=19363283&ddparam=&ddvalue=&ddsub=&cr=1&csb=default&cs=ASC

Initiative to assemble a multicenter team of expert neuroscientists to evaluate the late effects of Traumatic brain injury (TBI), including single and repetitive TBI of varying severity, and Chronic Traumatic Encephalopathy (CTE), using histological examination of postmortem bio specimens and neuroimaging tools as a foundation to develop in vivo diagnostics. As a first aim, this proposal will bring together a team of 5 accomplished neuropathologists in neurodegenerative disease to establish consensus criteria for the post-mortem diagnosis of CTE. This team will also define the stages of CTE pathology, the features that differentiate CTE from other neurodegenerations and the effects of substance abuse, and the characteristics of posttraumatic neurodegeneration after single TBI. As a second aim, this proposal will establish a national bio specimen and data bank for TBI (Understanding Neurological Injury and Traumatic Encephalopathy (UNITE) bio bank) by developing a nationwide brain donor registry and hotline to acquire high quality bio specimens and data. The UNITE bank will use strictly standardized protocols and a web-based interface to ensure that tissue and data are readily available to qualified investigators. Comprehensive retrospective clinical data including clinical symptoms, brain trauma and substance abuse history, and medical records (including common data elements) will be entered into a secure database. Behavioral/ mood dysfunction, cognitive changes, substance abuse and traumatic exposure will be correlated with quantitative assessment of the multifocal tauopathy, Ass deposition and axonal injury. As a third aim, neuroimaging signatures of the neuropathology will be determined in post-mortem tissue using high spatial resolution diffusion tensor imaging (DTI) and autoradiography using a highly selective PET ligand for tau. Quantitative assessment of axonal injury, tau, and Ass will be correlated with ex vivo DTI abnormalities and tau ligand autoradiography. Pilot neuroimaging studies of individuals at high risk for the development of CTE will also be conducted in the final 2 years of the proposal. This proposal will determine the clinical and neuroimaging correlates of CTE and posttraumatic neurodegeneration and create the groundwork for establishing their incidence and prevalence. This study will have a tremendous impact on public health of millions of Americans and greatly increase our understanding of the latent effects of brain trauma.

Proper citation: CTE and Post-traumatic Neurodegeneration: Neuropathology and Ex Vivo Imaging (RRID:SCR_006543) Copy   

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http://f1000.com/

Service that identifies and evaluates the most important articles in biology and medical research publications. The selection process comprises a peer-nominated global ''Faculty'' of the world''s leading scientists and clinicians who rate the best of the articles they read and explain their importance. Faculty Members and their evaluations are organized into over 40 Faculties (subjects), which are further subdivided into over 300 Sections. On average, 1500 new evaluations are published each month; this corresponds to approximately the top 2% of all published articles in the biological and medical sciences. F1000 is a subscription service paid for by academic and corporate institutions. Users at subscribing institutions automatically receive full access to the F1000 service when using internet facilities provided by their institution.

Proper citation: F1000: Faculty of 1000 Post-Publication Peer Review (RRID:SCR_006537) Copy   

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http://www.LOVD.nl/

Freely available tool for Gene-centered collection and display of DNA variations. It also provides patient-centered data storage and storage of Next Generation Sequencing (NGS) data, even of variants outside of genes. Please note that LOVD provides a system for storage of information on genes and allelic variants. To obtain information about any genes or variants, do not download the LOVD package. This information should be obtained from the respective databases, http://www.lovd.nl/2.0/index_list.php In total: 2,507,027 variants (2,208,937 unique) in 170,935 individuals in 62619 genes in 88 LOVD installations. (Aug. 2013) LOVD 3.0 shared installation, http://databases.lovd.nl/shared/genes To maintain a high quality of the data stored, LOVD connects with various resources, like HGNC, NCBI, EBI and Mutalyzer. You can download LOVD in ZIP and GZIPped TARball formats.

Proper citation: Leiden Open Variation Database (RRID:SCR_006566) Copy   

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http://www.nkdep.nih.gov/lab-evaluation/gfr/creatinine-standardization.shtml

Standard specification to reduce inter-laboratory variation in creatinine assay calibration and therefore enable more accurate estimates of glomerular filtration rate (eGFR). Created by NKDEP''''s Laboratory Working Group in collaboration with the International Federation of Clinical Chemistry and Laboratory Medicine (IFCC) and the European Communities Confederation of Clinical Chemistry (now called the European Federation of Clinical Chemistry and Laboratory Medicine), the effort is part of a larger NKDEP initiative to help health care providers better identify and treat chronic kidney disease in order to prevent or delay kidney failure and improve patient outcomes. Recommendations are intended for the USA and other countries or regions that have largely completed standardization of creatinine calibration to be traceable to an isotope dilution mass spectrometry (IDMS) reference measurement procedure. The program''''s focus is to facilitate the sharing of information to assist in vitro diagnostic manufacturers, clinical laboratories, and others in the laboratory community with calibrating their serum creatinine measurement procedures to be traceable to isotope dilution mass spectrometry (IDMS). The program also supports manufacturers'''' efforts to encourage their customers in the laboratory to coordinate use of standardized creatinine methods with implementation of a revised GFR estimating equation appropriate for use with standardized creatinine methods. Communication resources and other information for various segments of the laboratory community are available in the Creatinine Standardization Recommendations section of the website. Also available is a protocol for calibrating creatinine measurements using whole blood devices. The National Institute for Standards and Technology (NIST) released a standard reference material (SRM 967 Creatinine in Frozen Human Serum) for use in establishing calibrations for routine creatinine measurement procedures. SRM 967 was validated to be commutable with native serum samples for many routine creatinine procedures and is useful to establish or verify traceability to an IDMS reference measurement procedure. Establishing calibrations for serum creatinine methods using SRM 967 not only provides a mechanism for ensuring more accurate measurement of serum creatinine, but also enables more accurate estimates of GFR. For clinical laboratories interested in independently checking the calibration supplied by their creatinine reagent suppliers/manufacturers, periodic measurement of NIST SRM 967 should be considered for inclusion in the lab''''s internal quality assurance program. To learn more about SRM 967, including how to purchase it, visit the NIST website, https://www-s.nist.gov/srmors/quickSearch.cfm

Proper citation: Creatinine Standardization Program (RRID:SCR_006441) Copy   

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http://omim.org

Online catalog of human genes and genetic disorders, for clinical features, phenotypes and genes. Collection of human genes and genetic phenotypes, focusing on relationship between phenotype and genotype. Referenced overviews in OMIM contain information on all known mendelian disorders and variety of related genes. It is updated daily, and entries contain copious links to other genetics resources.

Proper citation: OMIM (RRID:SCR_006437) Copy   

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http://www.mayoclinic.org/

Nonprofit academic medical center focused on integrated clinical practice, education, and research with three major campuses: Rochester, Minnesota; Jacksonville, Florida; and Phoenix/Scottsdale, Arizona. Practice specializes in treating difficult cases through tertiary care and destination medicine.

Proper citation: Mayo Clinic (RRID:SCR_011383) Copy   

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http://www.biospace.com/

Online community for industry news and careers for life science professionals.

Proper citation: BioSpace (RRID:SCR_012010) Copy   

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http://www.ninds.nih.gov/funding/

Research funding for basic and clinical neuroscience trials to help train investigators and better understand diagnosis, treatment, and prevention of neurological disorders. Funds are allocated by Congress on a yearly basis.

Proper citation: National Institutes of Neurological Disorders and Stroke: Research Funding (RRID:SCR_012874) Copy   

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http://www.nichd.nih.gov/research/supported/pages/tbi.aspx

The National Center for Medical Rehabilitation Research (NCMRR) established a multi-center network of sites that are working together to design clinical intervention protocols and measures of outcome for TBI. Through rigorous patient evaluation, using common protocols and interventions designed for multiple points of care����??including the accident scene, emergency room, intensive care unit, rehabilitation and long-term follow-up����??the NCMRR TBI Clinical Trials Network can study the required numbers of patients to provide answers more rapidly than individual centers acting alone. This interdisciplinary research Network is designed to evaluate the relationship among acute care practice, rehabilitation strategies, and the long-term functional outcome of TBI patients����??that is, to identify which intervention variables result in improvements in long-term outcomes. Taking advantage of the network model structure has allowed TBI research to progress toward a number of clinical research goals. Specifically, the NCMRR wants to highlight two major achievements to date. First, the TBI Network created a profile of its typical patient to determine the number of patients with different clinical features who might be eligible for future studies and to help estimate recruitment times necessary. Second, Network researchers are developing clinical treatment guidelines and procedures for all points in the continuum of care, including TBI Clinical Trials Network Guidelines for surgical care, systems-based protocol for severe and moderate TBI patients, deep-vein thrombosis prophylaxis procedures, and rehabilitation guidelines for physical therapy, speech-language pathology, occupational therapy, and neuropsychology.

Proper citation: Traumatic Brain Injury Clinical Trials Network (RRID:SCR_013165) Copy   

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http://www.kennedykrieger.org/kki_2nd_inside.jsp?pid=3

Kennedy Krieger Institute is an institution dedicated to improving the lives of children and adolescents with pediatric developmental disabilities through patient care, special education, research, and professional training. Kennedy Kriegers clinical programs offer an interdisciplinary approach in treatment tailored to the individual needs of each child. Services include over 40 outpatient clinics; neurobehavioral, rehabilitation, and pediatric feeding disorders inpatient units; plus several home and community programs providing services to assist families. At Kennedy Krieger, there is no shortage of clinical programs to meet the specialized needs of children and adolescents with developmental disabilities. More than 35 different outpatient clinics, three inpatient units, several home and community programs and clinical laboratories all address the specific conditions of children with a wide range of disorders. Kennedy Krieger is recognized for its range of services in areas including autism, cerebral palsy, spina bifida, neurorehabilitation and feeding disorders. Kennedy Krieger school, is a nationally recognized Blue Ribbon School of Excellence, and is a leader in providing model programs of innovative education for children, adolescents and young adults with a wide range of learning, emotional, physical, neurological, and developmental disabilities. Faculty at Kennedy Krieger are among some of the worlds leading experts in this field and are attuned to the special needs of this population. These faculty have made crucial medical discoveries leading to innovative treatments and have improved the lives of individuals with disabilities. In addition to providing evaluation, rehabilitation, educational services and cutting edge research on behalf of children with brain related disabilities, Kennedy Krieger also provides professional training by renowned experts dedicated to increasing the number of qualified specialists in the United States and abroad. Children treated at Kennedy Krieger are seen by a variety of health care professionals working together in one or more of the Institutes clinical disciplines or departments. These highly trained professionals work directly with the Institutes medical staff to provide coordinated, interdisciplinary care tailored to the special needs of each child. This interdisciplinary approach puts Kennedy Krieger at the forefront in providing patient care for individuals with multiple developmental disabilities. Additionally, Kennedy Krieger Institutes Department of Special Education includes a number of programs that offer service to children with disabilities in a variety of settings. Kennedy Krieger School programs offer special education and related services to students aged 3-21 in three day-school settings and in partnership settings within public schools. For your convenience, a list of diagnoses/disorders treated at Kennedy Krieger Institute has been compiled to provide helpful related information for each diagnosis/disorder and include definitions, symptoms, treatment programs available at Kennedy Krieger, research being conducted at Kennedy Krieger, press releases, Potential articles and links to other helpful additional resources and websites outside the Institute.

Proper citation: Kennedy Krieger Institute: Diagnoses/Disorders (RRID:SCR_013260) Copy   

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http://www.nncc-exam.org/

Organization that established credentialing mechanisms to promote patient safety and to improve the quality of care provided to nephrology patients. There is a diversity of examinations providing the opportunity for certification at various levels of education, experience, and areas of practice within nephrology nursing. All of the certification examinations are endorsed by American Nephrology Nurses'''' Association (ANNA). The Commission recognizes the value of education, administration, research, and clinical practice in fostering personal and professional growth and currently provides six examinations to validate clinical performance: * The Certified Dialysis Nurse examination * The Certified Dialysis LPN/LVN examination * The Certified Nephrology Nurse examination * The Certified Clinical Hemodialysis Technician * The Certified Clinical Hemodialysis Technician - Advanced * The Certified Nephrology Nurse - Nurse Practitioner

Proper citation: Nephrology Nursing Certification Commission (RRID:SCR_003994) Copy   

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http://www.cbioc.com/en/

Commercial organization that discovers, validates & analyzes genomic biomarkers with a focus on body fluid samples. Take advantage of their proven expertise in biomarker signature development and speed up your biomarker studies.

Proper citation: Comprehensive Biomarker Center (RRID:SCR_003901) Copy   

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http://www.hospira.com/

American global pharmaceutical and medical device company with headquarters in Lake Forest, Illinois.Provider of injectable drugs and infusion technologies and global leader in biosimilars. From September 2015 Hospira is part of Pfizer.

Proper citation: Hospira (RRID:SCR_003985) Copy   

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http://www.era-edta.org/

An association of European kidney specialists whose objective is advancement of medical science and of clinical work in nephrology, dialysis, renal transplantation, hypertension and related subjects. They aim at providing up-to-date knowledge, exclusively based on scientific data, independent from governments'' policies and from any influence of the industry. It is registered in England and Wales, but its area of activity mainly covers Europe and the Mediterranean area.

Proper citation: ERA-EDTA (RRID:SCR_003982) Copy   

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http://www.quartzbio.com/

A Swiss service and consulting company specialized in the computational analysis of biomarker data from clinical trials. Their technical expertise spans across multiple biomaker technological platforms such as genetics, transcriptomics, protein assays and cellular assays. Quartz Bio is a spin-off of Merck Serono with the capital of the company entirely owned by its employees.

Proper citation: Quartz Bio (RRID:SCR_003919) Copy   

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http://www.qualissima.com/en/

A Research as a Service (RaaS) Company founded by a Clinical Pharmacologist and Neuropsychiatrist that offers to its partners (health products industries and public research), 3 platforms: * Clinical research (CRO and SMO) * Scientific & regulatory consulting * Online surveys (Web portal) Their Research & Development profile allows them to propose innovative concepts such as : * Patient-Leader studies * Translational research studies (fMRI, innovative biomarkers, modeling, ...) * Behavioral parameters as biomarkers studies Qualissima also proposes proof of concept studies, proof of activities studies, medical devices studies and observational studies.

Proper citation: Qualissima (RRID:SCR_003941) Copy   

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http://www.arborresearch.org/

A not-for-profit research organization committed to improve patient care through research that shapes medical policies and practice. In particular, they conduct health outcomes research on chronic disease and end-stage organ failure, with expertise in biostatistical analysis, clinical practice, health economics, public policy, database management and integration, and project coordination. Through research projects that are national and global in scope, their scientific collaborations provide valuable and timely information to the worldwide health care community. They are a leader in interdisciplinary health outcomes and policy research focused on reducing the health and economic burden of chronic diseases and improving the delivery of care.

Proper citation: Arbor Research Collaborative for Health (RRID:SCR_003972) Copy   

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