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The 16 affiliated Model System centers throughout the United States are responsible for gathering and submitting the core data set to the national database as well as conducting research studies on traumatic brain injury (TBI) both in collaboration with the other centers and within our own site. Through our research we hope to learn more about TBI and about the issues and concerns of people with TBI. Our goals are to improve the outcome and quality of life for people who have had brain injuries and for those who are caring for the person with a TBI. The North Texas Traumatic Brain Injury Model System (NT-TBIMS) pools the efforts and talents of individuals from the Departments of Neurosurgery, Neurology, Physical Medicine and Rehabilitation, Psychiatry (Neuropsychiatry), and Neuroradiology of the two leading medical institutions in the North Texas region. To be a patient involved in the research being conducted by the North Texas Traumatic Brain Injury Model System you must have suffered a TBI, be at least 16 years of age, have received initial treatment for the TBI at either Parkland Health and Hospital System or Baylor University Medical Center and then have received rehabilitative care at either Parkland, University Hospital Zale-Lipshy, or Baylor Institute for Rehabilitation. The patient must also be able to understand and sign an informed consent to participate or, if unable, have a family member or a legal guardian who understands the form sign the informed consent for the patient.
Proper citation: North Texas Traumatic Brain Injury Model System (RRID:SCR_005879) Copy
Initiative to develop a systematic, evidence-based process for evaluating genetic tests and other applications of genomic technology that are rapidly moving from research to use in clinical practice. A key objective of this process is to provide objective, timely, and credible information that is clearly linked to the scientific evidence on specific applications of genetic and genomic tests. The primary focus of EGAPP activities is an independent, nonfederal expert panel, the EGAPP Working Group. Other components of the EGAPP initiative include a federal interagency, the CDC staff and consultants, and an EGAPP initiative evaluation team.
Proper citation: EGAPP (RRID:SCR_004189) Copy
ISCoS promotes the highest standard of care in the practice of spinal cord injury for men, women and children throughout the world. Through its medical and multi disciplinary team of Professionals ISCoS endeavours to foster education, research and clinical excellence. ISCoS has a membership of over 1,000 Clinicians and Scientists from 87 countries. They regularly update their knowledge at the Annual Scientific Meeting held in a different country each year. Goals of ISCoS: :- Serve as an international impartial, non-political and non-profit making association whose purpose is to study all problems relating to traumatic and non-traumatic lesions of the spinal cord. This includes causes, prevention, basic and clinical research, medical and surgical management, clinical practice, education, rehabilitation and social reintegration. This society will function in close collaboration with other national and international bodies, thereby encouraging the most efficient use of available resources. :- Provide a scientific exchange among its members and others by collecting and disseminating information through publications, correspondence, exhibits, regional and international seminars, symposia, conferences and otherwise. :- Advise, encourage, promote and when requested, assist in efforts to co-ordinate or guide research, development and evaluation activities related to spinal cord lesions throughout the world. :- Advise, encourage, guide and support the efforts of those responsible for the care of patients involved and when requested, correlate these activities throughout the world. :- Advise, encourage, guide and support the efforts of those responsible for the education and training of medical professionals and professionals allied to medicine and when requested, correlate these activities throughout the world.
Proper citation: International Spinal Cord Society (RRID:SCR_002908) Copy
An institute which provides infrastructure, services, and training to support clinical and translational research. It develops broad coalitions and partnerships at the local and national levels to enable a transformation of the research environment.
Proper citation: UCSF Clinical and Translational Science Institute (RRID:SCR_014711) Copy
http://hopkinsneuro.org/research/jhu_nimh/
The Johns Hopkins NIMH Center is comprised of an interdisciplinary research team who has pooled their talents to study the nature of HIV-associated neurocognitive disorders (HAND). Their aim is to translate discoveries of the pathophysiological mechanisms into novel therapeutics for HAND. Objectives * To integrate aspects of ongoing research in HAND and SIV encephalitis * Develop high-throughput and screening assays for identifying novel therapeutic compounds * Use proteomics and lipidomics approaches to indentifying surrogate markers of disease activity * Disseminate information and education about HAND through existing and new educational systems, including the JHU AIDS Education Training Center and the JHU Center for Global Clinical Education * Facilitate the entry of new investigators into Neuro-AIDS research, and to catalyze new areas of research, particularly where relevant for drug discovery or the development of validated surrogate markers
Proper citation: Johns Hopkins NIMH Research Center Novel Therapeutics of HIV-associated Cognitive Disorders (RRID:SCR_001891) Copy
THIS RESOURCE IS NO LONGER IN SERVICE. Documented on July 31,2025. The projected cluster includes the LBIs for Applied Cancer Research, Clinical Oncology and Photodynamic Therapy, Gynecology and Gynecologic Oncology, Stem Cell Transplantation and Surgical Oncology. The aim of the projected cluster Translational Oncology is the cooperative investigation of genetic and molecular biological characteristics of the tumor cells involved in minimal residual disease (MRD) in vitro and translation of the experimental and diagnostic results into the clinical practice involving therapeutic modalities with the newest generation of antitumoral drugs. Minimal residual disease is the designation for the occurrence of a low number of tumor cells remaining clinically undetected following curative therapy that give rise to tumor relapses. MRD is a central question in cancer therapy, since a major subpopulation of patients which underwent curative resection and therapy ultimately relapse and would have received more aggressive adjuvant therapy, provided that residual disease had been clearly proven. Otherwise low-risk patients would have not been treated aggressively in an adjuvant setting. MRD can be detected by methods in bone marrow or by extremely sensitive PCR (polymerase-chain-reaction)-based methods in peripheral blood. PCR-based methods allow for the characterization of tumor-specific gene expression in circulating tumor cells and thereby provide additional information in regard to malignity of cells and prognosis. The different participating institutions have extensive experience in patient care, organization of clinical studies and laboratory investigation. In particular, expert knowledge in stem cell transplantation and histological detection of MRD, multicentric clinical testing of new anticancer drugs, specialized treatment of various selected tumor entities such as neuroendocrine tumors, gene expression analysis of circulating tumor cells and tumor signatures, and in vitro characterization of chemosensitivity as well as tumor cell biology have been acquired at the individual LBIs in the past and are complementary to each other to be combined in a larger cluster structure. The detection of circulating tumor cells will be supported by ongoing EU (OVCAD OVarian CAncer Diagnosis) and GenAU projects aiming at identification of ovarian cancer cells in the blood. The assessment of methylated DNA sequences (suppressor genes) in peripheral blood as an indicator of MRD can be performed with the help of OncoLab Diagnostics GmbH. Cooperative action in this cluster, using a common tumor bank/clinical data collection and the combined clinical and experimental efforts are the base for the execution of the presented MRD project.
Proper citation: Ludwig Boltzmann Cluster Translationale Onkologie (RRID:SCR_000020) Copy
http://www.bumc.bu.edu/cardiovascularproteomics/
The Cardiovascular Proteomics Center is a research center funded by the NIH/NHLBI to analyze and identify proteins that may be modified or created by oxidative stress. The CPC is developing and applying new proteomics methodology and instrumentation to the analysis of known proteins and those yet to be discovered.
Proper citation: Cardiovascular Proteomics Center (RRID:SCR_000603) Copy
http://www.spinal-research.org/
Spinal Research committed to funding international research into cure for spinal cord paralysis. Charity that funds medical research for treating and curing spinal cord paralysis. Supports basic science, clinical research and funds PhD students. ISRT also hosts Annual Network Meetings.
Proper citation: Spinal Research (RRID:SCR_000701) Copy
http://neurogenetics.nia.nih.gov
A suite of web-based open source software programs for clinical and genetic study. The aims of this software development in the Laboratory of Neurogenetics, NIA, NIH are * Build retrievable clinical data repository * Set up genetic data bank * Eliminate redundant data entries * Alleviate experimental error due to sample mix-up and genotyping error. * Facilitate clinical and genetic data integration. * Automate data analysis pipelines * Facilitate data mining for genetic as well as environmental factors associated with a disease * Provide an uniformed data acquisition framework, regardless the type of a given disease * Accommodate the heterogeneity of different studies * Manage data flow, storage and access * Ensure patient privacy and data confidentiality/security. The GERON suite consists of several self contained and yet extensible modules. Currently implemented modules are GERON Clinical, Genotyping, and Tracking. More modules are planned to be added into the suite, in order to keep up with the dynamics of the research field. Each module can be used separately or together with others into a seamless pipeline. With each module special attention has been given in order to remain free and open to the academic/government user., THIS RESOURCE IS NO LONGER IN SERVICE. Documented on September 16,2025.
Proper citation: GERON (RRID:SCR_008531) Copy
Project focused on cerebral aneurysms and provides integrated decision support system to assess risk of aneurysm rupture in patients and to optimize their treatments. IT infrastructure has been developeded for management and processing of vast amount of heterogeneous data acquired during diagnosis.
Proper citation: aneurIST (RRID:SCR_007427) Copy
https://ida.loni.usc.edu/login.jsp
Archive used for archiving, searching, sharing, tracking and disseminating neuroimaging and related clinical data. IDA is utilized for dozens of neuroimaging research projects across North America and Europe and accommodates MRI, PET, MRA, DTI and other imaging modalities.
Proper citation: LONI Image and Data Archive (RRID:SCR_007283) Copy
IDARS is an international scientific organization that promotes and fosters the research and collaboration of scientists around the world in the area of substances of abuse and addiction. Our focus is to foster research in molecular, cellular and systems biology and includes neuropharmacological, neurobehavioral, neurochemical and neuroanatomical themes. The purposes of IDARS are scientific, educational and charitable. We strive to promote excellence in: advancing the understanding of drug abuse, substance abuse and addictions, including the part they play in behaviors of humans and in animal models bringing together scientists of varying backgrounds and disciplines within the field of drug abuse research integrating drug abuse research directed at all levels of biological organization and its translation to improvement in clinical prevention and treatment efforts promoting education in the addiction sciences informing the general public on the results and implications of current research in the addiction sciences promoting other activities that will contribute to the development of addiction sciences IDARS is a 501c3 nonprofit organization.
Proper citation: International Drug Abuse Research Society (RRID:SCR_007411) Copy
http://www.hopkins-hivguide.org/
Launched in 2004, the HIV Guide is a single disease resource, with two main parts: the HIV database, which is accessed by searching on diagnosis, drug name, pathogen, or management or by accessing the resistance tool, and there are also browsable areas of the site, which include news, features, continuing medical education programs and other types of additional readings and information. Guides are authored by academic clinicians and subject to rigorous peer review. You may browse the guide by: Diagnosis Covering opportunistic infections, malignancies, and complications of therapy. Drugs Includes indications, dosing, drug interactions, and author recommendations. Pathogen - Describes microbiology, clinical syndromes, and therapy. Management Including antiretroviral therapy guidelines and strategies. Resistance Tool Provides up-to-date interpretation of genotypic resistance test results. Whether searching for a drug, a pathogen, a diagnosis, or a management issue, your search results will be delivered in a concise and standard form designed to give you the most clinically useful information first, with the option to go deeper if you choose. If you search by diagnosis, you will receive a page listing points covering establishment of a diagnosis, related pathogens, treatment recommendations, issues to consider on follow up, references and more. At each step, we provide you immediately with the information you need to treat the diagnosis and give you the option to read more or more deeply if you choose. On the diagnosis page, you are also provided with links to the information sheet for each drug that may be prescribed, and if you indicate which drug you intend to use, you will be provided with relevant drug selected comments. If you search by drug, you will receive a page listing FDA indications, usual adult dosing, adverse drug reactions, drug interactions, spectrum, and forms. You are also able to access full pharmacological information (mechanism, absorption, Cmax, volume of distribution, protein binding, metabolism/excretion, t _, dosing for glomerular filtration of 50-80, dosing for glomerular filtration of 10-50, dosing for glomerular filtration of <10 ml/min, dosing in hemodialysis, dosing in peritoneal dialysis, dosing in cavh, dosing for decreased hepatic function, pregnancy risk, and breast feeding compatibility). If you search by pathogen, you will receive a page covering the microbiology, clinical relevance, sites of infection, drug selected comments, other information and references. You are also provided with links to information for each drug that may be prescribed, and if you indicate which drug you intend to use, you will be provided with the drug selected comments for that choice. If you search by management, you will receive a page listing definition, indications, and clinical recommendations and additional details, including references. If you click on more wherever it appears on a page, you will find more detailed material about the topic. In addition, the HIV Guide homepage contains a Features section and Literature Review that contain synopses and articles about pertinent topics. The Publications section also provides .pdf versions of the Hopkins HIV Report. Prices represent the cost per unit specified, reflecting the Average Wholesale Price (AWP). AWP prices are taken from the Red Book, manufacturer information, and the McKesson database. These prices are updated every six months. We have listed up to 10 FDA-approved indications for uses of drugs. Though in some cases more may exist, for brevity and formatting issues authors and editors have chosen what they deem the most important. Also listed are disease states for which a drug may be likely prescribed regardless of FDA approval status (see Non-FDA approved uses). The HIV Guide is primarily focused on adult care but does cover issues of perinatal transmission. The material presented on this site represents the considered opinion of the Hopkins expert listed as the author of the module as of the date indicated. The reference section contains an annotated list of the articles that the author considers to be most relevant to the topic. Where authoritative guidelines exist, such as CDC, IDSA or Medical Letter guidelines, they are referenced and discussed along with the author''s recommendations presented.
Proper citation: HIV Guide (RRID:SCR_008252) Copy
Database of images on medical parasitology created to provide educational materials for medical students primarily, but professional workers in medical or paramedical fields may also refer to this site covering the significant parasites in the world. Each database of protozoans, nematodes, trematodes, cestodes and arthropods contains information on the morphology, life cycle, geographical distribution, symptoms, prevention, etc. Users who wish to contribute can send the editor unpublished images of human parasites (microscopical, clinical, radiological or epidemiological aspects of human parasitic infections) by mail or e-mail. Pathology specimens (slide, samples) are welcome too. The A.M.P. received the citation of reliable sources such as Parasitology today and The Lancet, and is now listed in the Internet Resources on Specific Infectious Diseases Topics of the Mandell, Douglas and Bennets Principles and Practice of Infectious Diseases Fifth Edition.
This website was established with a great contribution of the PROJECT COLLABORATORS and many contributors of The Korean Society for Parasitology.
Proper citation: Atlas of Medical Parasitology (RRID:SCR_008163) Copy
http://www.hopkins-abxguide.org/
Concise, clinically useful information for diagnosing, managing and treating infectious diseases in adults; however it does cover some pediatric topics including vaccines. It is designed for primary care providers and other non-infectious disease specialists as a tool that can be used at the point of care to assist in prescribing antibiotics.
Proper citation: ABX Guide (RRID:SCR_008214) Copy
https://www.radc.rush.edu/res/ext/home.htm
An Alzheimer's disease center which researches the cause, treatment and prevention of Alzheimer's disease with a focus on four main areas of research: risk factors for Alzheimer's and related disorders, the neurological basis of the disease, diagnosis, and treatment. Data includes a number of computed variables that are available for ROS, MAP and MARS cohorts. These variables are under categories such as affect and personality, chronic medical conditions, and clinical diagnosis. Specimens include ante-mortem and post-mortem samples obtained from subjects evaluated by ROS, MAP and clinical study cores. Specimen categories include: Brain tissue (Fixed and frozen), Spinal cord, Muscles (Post-mortem), and Nerve (Post-mortem), among other types of specimens. Data sharing policies and procedures apply to obtaining ante-mortem and post-mortem specimens from participants evaluated by the selected cohorts of the RADC.
Proper citation: Rush Alzheimer's Disease Center (RRID:SCR_008763) Copy
The NYU Alzheimer's Disease Center is part of the Department of Psychiatry at New York University School of Medicine. The center's goals are to advance current knowledge and understanding of brain aging and Alzheimer's disease, to expand the numbers of scientists working in the field of aging and Alzheimer's research, to work toward better treatment options and care for patients, and to apply and share its findings with healthcare providers, researchers, and the general public. The ADC's programs and services extend to other research facilities and to healthcare professionals through the use of its core facilities. The NYU ADC is made up of seven core facilities: Administrative Core, Clinical Core, Neuropathology Core, Education Core, Data Management and Biostatistics Core, Neuroimaging Core, and Psychosocial Core.
Proper citation: NYU Alzheimer's Disease Center (RRID:SCR_008754) Copy
http://www.nia.nih.gov/research/dgcg/clinical-research-study-investigators-toolbox
The purpose of the NIA Clinical Research Toolbox is to provide a Web-based information repository for investigators and staff involved in clinical research. The Toolbox contains templates, sample forms, guidelines, regulations and information materials to assist investigators in the development and conduct of high quality clinical research studies.
Proper citation: Clinical Research Study Investigators Toolbox (RRID:SCR_008815) Copy
THIS RESOURCE IS NO LONGER IN SERVICE. Documented on December 5, 2022. Endoscopic Reporting Software, aggregated and individual research data and tailor-made services aimed to advance the overall practice of endoscopy. It was developed to study outcomes of gastrointestinal (GI) endoscopic procedures in real life settings, using data obtained from the CORI Endoscopic Reporting Software or from other endoscopic reporting software. Practice sites include hospitals, ambulatory care centers, private practices, universities, and Veteran''''s hospitals (VA''''s). The CORI v4 Endoscopic Reporting Software is a specialty Electronic Health Record used to document endoscopic procedures and provide reporting services to your practice. Data from participating providers is also sent to a central data repository to become part of the National Endoscopic Database (NED), which now contains data from over 2.7 million GI procedures. The CORI v4 Endoscopic Reporting Software offers significant benefits for participating practices, providers and patients, as well as for everyone who benefits from CORI''''s research efforts. You may actively participate in research with CORI. If you have ideas for research using the NED, their research team can help you evaluate those ideas, collect and analyze the data. In addition, you may choose to participate in one of the prospective research projects conducted by CORI research staff.
Proper citation: Clinical Outcomes Research Initiative (RRID:SCR_009010) Copy
https://portal.dbmi.hms.harvard.edu/projects/GRDR/
Data repository of de-identified patient data, aggregated in a standardized manner, to enable analyses across many rare diseases and to facilitate various research projects, clinical studies, and clinical trials. The aim is to facilitate drug and therapeutics development, and to improve the quality of life for the many millions of people who are suffering from rare diseases. The goal of GRDR is to enable analyses of data across many rare diseases and to facilitate clinical trials and other studies. During the two-year pilot program, a web-based template will be developed to allow any patient organization to establish a rare disease patient registry. At the conclusion of the program, guidance will be available to patient groups to establish a registry and to contribute de-identified patient data to the GRDR repository. A Request for Information (RFI) was released on February 10, 2012 requesting information from patient groups about their interest in participating in a GRDR pilot project. ORDR selected 30 patient organizations to participate in this pilot program to test the different functionalities of the GRDR. Fifteen (15) organizations with established registries and 15 organizations that do not have patient registry. The 15 patient groups, each without a registry, were selected to assist in testing the implementation of the ORDR Common Data Elements (CDEs) in the newly developed registry infrastructure. These organizations will participate in the development and promotion of a new patient registry for their rare disease. The GRDR program will fund the development and hosting of the registry during the pilot program. Thereafter, the patient registry is expected to be self-sustaining.The 15 established patient registries were selected to integrate their de-identified data into the GRDR to evaluate the data mapping and data import/export processes. The GRDR team will assist these organizations in mapping their existing registry data to the CDEs. Participating registries must have a means to export their de-identified registry data into a specified data format that will facilitate loading the data into the GRDR repository on a regular basis. The GRDR will also develop the capability to link patients'''' data and medical information to donated biospecimens by using a Voluntary Global Unique Patient Identifier (GUID). The identifier will enable the creation of an interface between the patient registries that are linked to biorepositories and the Rare Disease Human Biospecimens/Biorepositories (RD-HUB) http://biospecimens.ordr.info.nih.gov/.
Proper citation: GRDR (RRID:SCR_008978) Copy
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