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https://www.genome.gov/27550959/undiagnosed-diseases-network-udn/

A network of clinical sites and core laboratories to accelerate discovery and innovate the way medical professionals diagnose and treat patients with previously undiagnosed diseases. It will serve to test whether this type of cross-disciplinary approach to disease diagnosis is feasible to implement in academic medical centers. It also provides clinical training of contemporary genomic approaches in diagnosing disease.

Proper citation: Undiagnosed Diseases Network (RRID:SCR_014415) Copy   

•   Source: SciCrunch Registry

https://t1dexchange.org/pages/

Provides access to resources T1D researchers need to conduct clinical studies. Data sets from their clinic registry is openly available, as are new study results. They also offer use of T1D Discovery Tool, which allows users to search different fields from registry data, and T1D Exchange Biobank, which offers specimen types such as serum, plasma, white blood cells, DNA, and RNA.

Proper citation: T1D Exchange (RRID:SCR_014532) Copy   

•   Source: SciCrunch Registry

http://projectreporter.nih.gov/project_info_description.cfm?aid=8662111&icde=19363315&ddparam=&ddvalue=&ddsub=&cr=2&csb=default&cs=ASC

A multi-center and multi-disciplinary study designed to dramatically increase understanding of chronic traumatic encephalopathy (CTE) and other late effects of traumatic brain injury (TBI). Overlapping clinical features, postmortem pathologies and patterns of involvement exist in TBI, CTE, and Alzheimer''s disease pose challenges to accurate diagnosis. Premortem diagnosis of CTE is currently impossible. The neuropathological consequences of single mild or moderate-severe TBI and its relationship with CTE and known dementias are unclear. The proposed project will leverage extensive resources from an ongoing population-based prospective cohort study of brain aging (Adult Changes in Thought; ACT, n=2,305) which includes excellent medical, behavioral, and genetic characterization of a cohort (20% of whom have a history of mild-moderate TBI) in addition to state-of-the-art neuropathology workup upon death. Neuropathological study of TBI effects can begin immediately in the existing ACT autopsy sample (n=489, 20% with TBI exposure). Additional cohorts of TBI- exposed individuals will come from the Brain Injury Research Center at Mount Sinai (n=150 individuals with moderate-severe TBI), the University of Texas Southwestern (n=50 retired boxers with repetitive TBI exposure), and the National Football League (n=76 retired players with repetitive TBI exposure). All participants in the proposed study (ACT and other sites) will undergo uniform harmonized neurobehavioral assessment (chosen to maximize correspondence with existing large-scale TBI and dementia studies), MRI scan, and genomic analysis. Those individuals who expire during the course of the study will undergo ex-vivo neuroimaging and extensive neuropathological exam using state-of-the-art techniques (such as Histelide) designed to quantify tau and A�� in whole brain specimens. Only by examining postmortem pathology in a sample of individuals with varying levels of TBI exposure who are well characterized during life (as proposed herein) can postmortem pathology facilitate identification of in-vivo biomarkers that can act as diagnostic tools. This project represents the most systematic and scientifically rigorous effort to date to develop a more complete understanding of the long-term clinical and neuropathological sequelae of single and multiple TBI.

Proper citation: Neuropathology of CTE and Delayed Effects of TBI: Toward In-Vivo Diagnostics (RRID:SCR_012951) Copy   

•   Source: SciCrunch Registry

http://www.aneuroa.org/

The American Neurological Association is a professional society of academic neurologists and neuroscientists devoted to advancing the goals of academic neurology; to training and educating neurologists and other physicians in the neurologic sciences; and to expanding both our understanding of diseases of the nervous system and our ability to treat them. Our Goals 1. To disseminate knowledge about the nervous system and its diseases by: Presenting new scientific basic and clinical information at an annual meeting Publishing a scientific journal Formulating and promoting high standards of neurologic practice 2. To promote research into the causes and treatment of diseases of the nervous system by: Attracting promising physicians into academic neurology and supporting their development Advocating financial support from government, industry and individuals for research on the nervous system and its disorders 3. To formulate and promote policies and actions which will support the goals of academic neurology by: Providing a unified voice for academic neurology Setting guidelines and assuring excellence in programs that train and educate physicians in neurology Raising the standard of neurologic training of all physicians A few highlights within the portal: Clinical Neuroscience Pathway Startling breakthroughs in molecular biology and basic neuroscience have defined the cause of many diseases of the nervous system and are transforming the practice of neurology, neurosurgery and psychiatry. Basic research is giving new information on how the brain works and how brain injury occurs-and how it can be prevented or improved. Recognizing the exciting opportunities now available to better understand nervous system function and to design new treatments for neurological diseases, we''ve developed an interdepartmental program: The Clinical Neuroscience Pathway to provide an enhanced exposure to the neurosciences while pursuing the Doctor of Medicine degree. Program goal: The Clinical Neuroscience Pathway provides medical students with an enriched experience in the neurosciences throughout their four years in medical school. This program will provide students interested in Neurology, Neurosurgery, Ophthalmology, Pathology, or Psychiatry with access to a number of stimulating clinical and research activities. In addition, students will have the opportunity to participate in activities specifically designed for medical students in the program. Pathway students will be eligible for special summer research and year-out opportunities for clinical and basic neuroscience study. John N. Whitaker Visiting Professorships About the Program The ANA offers up to five 5,000 awards annually to fund visits of several days duration by persons who will interact with medical students and by both formal and informal contacts, stimulate them to consider academic neurology careers. The ideal visitor will be a role model of an accomplished academician who is enthusiastic and will effectively illustrate the applications between basic science and clinical neurology. The ANAs Education Committee must approve the visitor. The inviting institution should have acceptance from the visitor prior to submitting the name. The ANA suggests that an honorarium in the amount of 2,000 be given to the visitor. Special consideration will be given to institutions with small departments, but this is not a requirement. The Whitaker Professorships are intended to honor the life and contributions of John N. Whitaker M.D. (1940 - 2001) whose life and career exemplified high achievement as a person, neurological physician, teacher, investigator, mentor and citizen.

Proper citation: American Neurological Association (RRID:SCR_012926) Copy   

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http://aidsinfo.nih.gov/DrugsNew/Default.aspx?MenuItem=Drugs

THIS RESOURCE IS NO LONGER IN SERVICE. Documented on March 12,2025. The AIDSinfo Drug Database provides fact sheets on HIV/AIDS related drugs. The fact sheets describe the drug''s use, pharmacology, side effects, and other information. The database includes: -Approved and investigational HIV/AIDS related drugs -Three versions of each fact sheet: patient, health professional, and Spanish. AIDSinfo is a 100% federally funded U.S. Department of Health and Human Services (DHHS) project that offers the latest federally approved information on HIV/AIDS clinical research, treatment and prevention, and medical practice guidelines for people living with HIV/AIDS, their families and friends, health care providers, scientists, and researchers. Sponsors: -National Institutes of Health (NIH) Office of AIDS Research National Institute of Allergy and Infectious Diseases (NIAID) National Library of Medicine (NLM) -Health Resources and Services Administration (HRSA) -Centers for Disease Control and Prevention (CDC) -Centers for Medicare and Medicaid Services (CMS)

Proper citation: AIDSinfo Drug Database (RRID:SCR_012899) Copy   

•   Source: SciCrunch Registry

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

The Department of Neurology at Louisiana State University Health Sciences Center in New Orleans provides state-of the-art clinical evaluation and care for patients with neurological diseases. Its educational and research programs share the common goals of enhancing the knowledge of neuroscience and improving the diagnosis and care of patients. One of their primary missions is to educate and train medical students, physicians and other health care providers. Their residency and fellowship programs provide physicians with comprehensive training and experience in general and subspecialty neurology. Furthermore, their research programs encompass diverse areas and expertise in neurology and neuroscience. And additionally, many of the department''s faculty have established collaborative multi-disciplinary research projects, especially with members of the LSU Neuroscience Center of Excellence. The Neurology Residency Program at LSU Health Sciences Center is fully accredited by the ACGME. The Department of Neurology is a component of the nationally respected LSU Health Sciences Center, which is the major medical training institution for the State of Louisiana. The LSU Health Sciences has many components, one of which is the Neuroscience Center of Excellence, a state of the art research center for the neurosciences. The LSU Health Sciences Center not only sponsors medical education, but also has a School of Nursing, Dentistry, Physical and Occupational Therapy. This allows for the flourishing of multidisciplinary research and innovative thinking. It accepts three residents per year; residents must complete one year of internal medicine prior to entering into our program. Additionally, LSUHSC Neurology has fellowship available in: - Child Neurology - Pain Management - Neurophysiology

Proper citation: Louisiana State University School of Medicine, Health Sciences Center: Department of Neurology (RRID:SCR_012934) Copy   

•   Source: SciCrunch Registry

http://i2b2.cchmc.org/

A data warehouse that integrates information on patients from multiple sources and consists of patient information from all the visits to Cincinnati Children''''s between 2003 and 2007. This information includes demographics (age, gender, race), diagnoses (ICD-9), procedures, medications and lab results. They have included extracts from Epic, DocSite, and the new Cerner laboratory system and will eventually load public data sources, data from the different divisions or research cores (such as images or genetic data), as well as the research databases from individual groups or investigators. This information is aggregated, cleaned and de-identified. Once this process is complete, it is presented to the user, who will then be able to query the data. The warehouse is best suited for tasks like cohort identification, hypothesis generation and retrospective data analysis. Automated software tools will facilitate some of these functions, while others will require more of a manual process. The initial software tools will be focused around cohort identification. They have developed a set of web-based tools that allow the user to query the warehouse after logging in. The only people able to see your data are those to whom you grant authorization. If the information can be provided to the general research community, they will add it to the warehouse. If it cannot, they will mark it so that only you (or others in your group with proper approval) can access it.

Proper citation: i2b2 Research Data Warehouse (RRID:SCR_013276) Copy   

•   Source: SciCrunch Registry

http://www.siumed.edu/alz/index.html

Resource center that provides assistance for patients and families affected by Alzheimer's disease and related conditions. The Center provides patient care through the Memory and Aging Clinic as well as through research, education and service to the community. Additionally the Center provides training in dementia care, maintains centralized data collection, and sponsors programs of research that qualify for federal financial participation.

Proper citation: SIU Center for Alzheimer's Disease and Related Disorders (RRID:SCR_013199) Copy   

•   Source: SciCrunch Registry

http://www.merge.com

Merge Healthcare Incorporated develops solutions that automate healthcare data and diagnostic workflow to enable a better electronic record of the patient experience, and to enhance product development for health IT, device and pharmaceutical companies. Merge products, ranging from standards-based development toolkits to sophisticated clinical applications, have been used by healthcare providers, vendors and researchers worldwide for over 20 years. Merge Healthcare utilizes decades of technology, expertise, intellectual property, innovative software development and expert services to build IT solutions for healthcare and biopharmaceutical customers worldwide. Merge Healthcares OEM applications and toolkits improve the process of transferring diagnostic data and images, and support integration of data from imaging procedures into broader health IT applications. These solutions provide an advanced start to software development, and are quietly inside many of today''s health IT systems. Merge Healthcares Medical Imaging Solutions bring mission-critical improvements for imaging workflow, from scheduling to billing through disaster recovery. Our Perioperative Solutions provide enhanced workflow for the entire surgery experience. Our customers, from the largest outpatient center chains to rural hospitals, have relied on Merge to bring them the solutions and services needed to run clinically and financially successful businesses. Merge Healthcares eClinical business unit, recently added through the acquisition of etrials Worldwide Inc., provides adaptive web-based tools that coordinate to transform data into intelligence and speed the path to an actionable study endpoint for clinical trials. Pharmaceutical, biotechnology, medical device and contract research organizations use integrated trial, site and patient solutions for real-time access to the high quality data they need to make informed decisions.

Proper citation: Merge Healthcare Incorporated (RRID:SCR_013521) Copy   

•   Source: SciCrunch Registry

http://www.agilent.com/

Company provides laboratories worldwide with analytical instruments and supplies, clinical and diagnostic testing services, consumables, applications and expertise in life sciences and applied chemical markets.

Proper citation: Agilent Technologies (RRID:SCR_013575) Copy   

•   Source: SciCrunch Registry

http://www.cerner.com/

A global health company contributing to the systemic improvement of health care delivery and the health of communities. We are transforming health care by eliminating error, variance and waste for health care providers and consumers around the world. Our solutions optimize processes for health care organizations ranging from single-doctor practices to entire countries, for the pharmaceutical and medical device industries, and for the field of health care as a whole. Our solutions are licensed by more than 9,000 facilities worldwide. We invite you to join us in our quest to make health care become all it should be. Since our company began, we have been committed to transformational change in the vital task of keeping people well. Now more than ever, our focus is on developing the innovations that will help improve the entire health care system. Ultimately, as our CEO Neal Patterson has said, health care is personal. Because in the end, nothing matters more than our health and our families. We''re changing the way people: * Use and share information ** We empower providers to base decisions on best clinical evidence. ** We coordinate care across traditionally fragmented health care systems. ** We provide clinical organizations with the reliability, flexibility and continuous innovation available through cloud-based intelligence. ** We provide contextually relevant information to the right people at the right time. * Pay for health and care ** We believe IT investment must be matched with innovative payment models that are much easier to navigate. ** We are replacing the current, claims-based system with streamlined electronic payments. ** We develop ways to reward people and their providers for proactively achieving positive health goals. * Think about health ** We empower people to actively engage in their health by providing them with a standards-based, lifetime Personal Health Record. ** We are replacing the reactive sick care model with a proactive, personalized plan for health.

Proper citation: Cerner Millenium (RRID:SCR_013581) Copy   

•   Source: SciCrunch Registry

http://www.dbmi.pitt.edu/nlpfront

THIS RESOURCE IS NO LONGER IN SERVICE, documented on July 17, 2013. Repository of de-identified clinical reports available for NLP researchers has been designed. Work with the AMIA NLP working group in designing annotation schemas and obtaining annotations, design a repository for shareable annotations, help design and execute a shared task in IE from clinical reports. The University of Pittsburgh NLP Repository contains clinical reports that are available to the community for NLP research purposes and comprises: # Report Repository - one month of de-identified clinical reports from multiple hospitals and # Annotation Repository - annotations performed on reports from the Report Repository. Anyone performing annotations on reports from the NLP Repository is required to deposit their annotations. The Repository contains reports of the following types generated from multiple hospitals during a single month: * History and Physicals * Progress Notes * Consultation Reports * Radiology Reports * Surgical Pathology Reports * Emergency Department Reports * Discharge Summaries * Operative Reports * Cardiology Reports

Proper citation: Open Clinical Report Repository (RRID:SCR_013585) Copy   

•   Source: SciCrunch Registry

http://cordis.europa.eu/project/rcn/98370_en.html

The Colon Therapy Research (COLTHERES) consortium brings together clinical centers and translational researchers funded in the European Union to define and perform biomarker driven clinical trials to improve cancer therapy outcomes. This 4-year consortium will use comprehensively molecularly-annotated colon cancers as a "test-bed" to define specific biomarkers of response or resistance to signaling pathway agents.

Proper citation: Colon Therapy Research Consortium (COLTHERES) (RRID:SCR_013690) Copy   

•   Source: SciCrunch Registry

https://www.immport.org/home

Data sharing repository of clinical trials, associated mechanistic studies, and other basic and applied immunology research programs. Platform to store, analyze, and exchange datasets for immune mediated diseases. Data supplied by NIAID/DAIT funded investigators and genomic, proteomic, and other data relevant to research of these programs extracted from public databases. Provides data analysis tools and immunology focused ontology to advance research in basic and clinical immunology.

Proper citation: The Immunology Database and Analysis Portal (ImmPort) (RRID:SCR_012804) Copy   

•   Source: SciCrunch Registry

http://www.elsevier.com/online-tools/embase

Comprehensive international bibliographic biomedical database that enables users to track and retrieve precise information on drugs and diseases from pre-clinical studies to searches on critical toxicological information. It contains bibliographic records with citations, abstracts and indexing derived from biomedical articles in peer reviewed journals, and is especially strong in its coverage of drug and pharmaceutical research. Embase can help with everything from clinical trials research to pharmacovigilance and is updated online daily and weekly. Its broad biomedical scope covers the following areas: * Drug therapy and research, including pharmaceutics, pharmacology and toxicology * Clinical and experimental (human) medicine * Basic biological science relevant to human medicine * Biotechnology and biomedical engineering, including medical devices * Health policy and management, including pharmacoeconomics * Public, occupational and environmental health, including pollution control * Veterinary science, dentistry, and nursing The Embase Application Programming Interface supports export, RSS feeds, and integration services, making it possible to share data with a wide range of systems.

Proper citation: EMBASE (RRID:SCR_001650) 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

http://www.anzctr.org.au

Register of clinical trials being undertaken in Australia, New Zealand and elsewhere including trials from the full spectrum of therapeutic areas of pharmaceuticals, surgical procedures, preventive measures, lifestyle, devices, treatment and rehabilitation strategies and complementary therapies. In 2007 the ANZCTR was one of the first three trial registries to be recognized by the World Health Organisation International Clinical Trials Registry Platform (WHO ICTRP) as a Primary Registry. WHO recognizes registries as Primary Registries if they fulfill certain criteria with respect to data content, quality and validity, accessibility, unique identification, technical capacity and administration. The ANZCTR contributes data to the WHO ICTRP, which was developed in 2007. Trials from all ICTRP Primary Registries can be searched at: www.who.int/trialsearch Studies should be registered prospectively, i.e. before the first patient is recruited. The registry records a trial's * objectives * main design features * sample size and recruitment status * treatments under investigation * outcomes being assessed * principal investigator * contact person Key points about the ANZCTR * Publicly owned, managed by a not-for-profit organization * All details of trials registered on the ANZCTR are made publicly available * Registration is voluntary, but if a registrant chooses to register a trial, certain fields are mandatory * Registration is free of charge * Responsibility for registration lies with the Sponsor

Proper citation: Australian New Zealand Clinical Trials Registry (RRID:SCR_002967) Copy   

•   Source: SciCrunch Registry

http://ncim.nci.nih.gov/ncimbrowser/

A wide-ranging biomedical terminology database that covers most terminologies used by NCI for clinical care, translational and basic research, and public information and administrative activities. NCIm features: * Maps 4,000,000 terms from more than 75 sources into 2,000,000 biomedical concepts that represent their meaning. * Displays preferred terms, synonyms, definitions, and other information from each source. * Links to NCI Thesaurus and other related information sources. * Contains 22,000,000 cross-links between content elements. * Updated frequently by a team of biomedical terminology and subject matter experts. NCIm contains most public domain terminologies from the National Library of Medicine's UMLS Metathesaurus, as well as many other biomedical terminologies created by or of interest to NCI and its partners. Some propriety terminologies are included, with permission, and have restrictions on their use. The current version of the NCI Metathesaurus, based on the UMLS build 2013AA, covers up to National Cancer Institute Thesaurus, 13.12d. A viewer for the UMLS changes document can be downloaded.

Proper citation: NCI Metathesaurus (RRID:SCR_003565) Copy   

•   Source: SciCrunch Registry

http://www.tubafrost.org/

THIS RESOURCE IS NO LONGER IN SERVICE. Documented on January 9, 2023. In this web site you will find the central European database of OECI-TuBaFrost collecting the information of biobanks or in the project support environment on human material; i.e., frozen tumor tissue specimens, pathology blocks, blood samples in different forms, cell lines, Tissue Micro Arrays, etc. Our goal is by centralizing the tumor tissues information to facilitate the search of doctors / researchers for tumor materials, which they need for their cancer research there with facilitating cancer research. OECI members only can participate in the OECI-TuBaFrost exchange platform, or those introduced by an OECI member. We are a group of pathology and research departments as well as bio-bankers in clinical based biobanking based in comprehensive cancer centers or hospitals with a competence in comprehensive cancer care across Europe. Each participating institute is involved in cancer research resulting in innovative procedures, new drugs, improved diagnosis and new insights in disease development. The overall result is better care and treatment for cancer patients. To maximize the scientific value of the human tissue samples, information about the clinical status of the patient in combination with the quality and type of samples is very important. A TuBaFrost electronic database will securely store all this information. Within the closed project supporting environments, the data collected will include: * Diagnosis - identification of the type of cancer * Type of tissue collected - the origin, i.e. breast, skin, colorectal * Quality of tissue collected - collection and storage details The tissue is stored in the hospital where the donor was diagnosed/treated. It stays there until it is used or sent to another hospital or research center within the TuBaFrost group. The electronic database will track samples throughout the network. The tissue is not sold. The exchange of tissue to other hospitals is regulated by a contract, which uses the national regulations of the country supplying the tissue. Tissue samples within the TuBaFrost collection will only be used for research, which has been approved by ethics committees. This ensures that the tissue is only used for the best quality research and only for the specific reasons given to the ethics committee.

Proper citation: OECI - Tubafrost: The European Human Frozen Tissue Bank (RRID:SCR_004280) Copy   

•   Source: SciCrunch Registry

http://www.rrcancer.ca/en/publique/accueil

An infrastructure to allow Quebec researchers to have at their disposal tumor banks and the services that support large scale research in genomics and proteomics. The database and the tissue bank of the research network was created to allow rapid access to biological samples and their clinical data. It is spread out over many hospital institutions (in Montreal, Quebec and Sherbrooke). The members of the RRCancer-BTD supply normal, benign and malignant samples from routine surgeries and blood tests. Blood and tissue samples are collected by the provincial biobanks on a regular basis and are coded, classified and stored. The samples can be supplied to a researcher either fresh or frozen or blocks of paraffin or on slices. The sharing of information and biological material is managed according to ethical rules and contributes to increasing the value of research in Quebec. The network has mobilized a significant number of researchers in the area of cancer that unite their efforts to pursue high caliber multidisciplinary research. They are a group of researchers from many different Qu��bec Universities all working in the branch of cancer research. They are located in four hospital centers in Quebec, namely the University of Montreal Hospital Centre (CHUM), the University of Quebec Hospital Centre (CHUQ), the University of Sherbrooke Hospital Centre (CHUS) and the McGill University Hospital Centre (CUSM), as well as in the affiliated research and university centers (Sacr��-Coeur, Maisonneuve-Rosemont and the Montreal Jewish Hospital). The collaborative efforts created and maintained in this network have allowed transfer of knowledge and the sharing of cutting edge technologies. RRCancer favors multidisciplinary cancer research in both fundamental and clinical scopes. The network is based on the desire researchers to work together to prevent cancer and improve therapeutic strategies, all the while continuing the very important task of raining new specialists and graduate students.

Proper citation: Cancer Research Network of the FRSQ (RRID:SCR_004225) Copy   

•   Source: SciCrunch Registry