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Research consortium to advance scientific research in the primary immune deficiency diseases (PIDD) and: * Assemble and maintain a registry of patients with primary immunodeficiency diseases to provide a minimum estimate of the prevalence of each disorder in the United States. Provide a comprehensive clinical picture of each disorder and act as a resource for clinical and laboratory research. * Establish a multifaceted mentoring program to introduce new investigators into the field and stimulate interest and research in primary immune deficiency diseases. * Establish an advisory/review committee to maintain a cell/DNA Repository of biologic material from well-characterized PIDD patients for the advancement of scientific research USIDNET operates a large database of patient information for your use. The purpose and scope of this project is to assemble and maintain a registry of residents with primary immunodeficiency diseases. The project was started with the Registry of U.S. Residents with Chronic Granulomatous Disease. Since then, the registry has been expanded and now collects data on all primary immunodeficiency disorders. The following are just a few of the diseases housed in the registry: Chronic Granulomatous Disease, Common Variable Immunodeficiency Disease, DiGeorge Anomaly, Hyper IgM Syndrome, Leukocyte Adhesion Defect, Severe Combined Immunodeficiency Disease, Wiskott-Aldrich Syndrome, X-Linked Agammaglobulinemia Physicians who would like to register their patients or access the registry are encouraged to contact Onika Davis or Lamar Hamilton, USIDNET team, at odavis (at) primaryimmune.org, or lhamilton (at) primaryimmune.org
Proper citation: USIDNET: US Immunodeficiency Network (RRID:SCR_004672) Copy
http://caintegrator-info.nci.nih.gov/rembrandt
THIS RESOURCE IS NO LONGER IN SERVICE. Documented on April 28,2023. REMBRANDT is a data repository containing diverse types of molecular research and clinical trials data related to brain cancers, including gliomas, along with a wide variety of web-based analysis tools that readily facilitate the understanding of critical correlations among the different data types. REMBRANDT aims to be the access portal for a national molecular, genetic, and clinical database of several thousand primary brain tumors that is fully open and accessible to all investigators (including intramural and extramural researchers), as well as the public at-large. The main focus is to molecularly characterize a large number of adult and pediatric primary brain tumors and to correlate those data with extensive retrospective and prospective clinical data. Specific data types hosted here are gene expression profiles, real time PCR assays, CGH and SNP array information, sequencing data, tissue array results and images, proteomic profiles, and patients'''' response to various treatments. Clinical trials'''' information and protocols are also accessible. The data can be downloaded as raw files containing all the information gathered through the primary experiments or can be mined using the informatics support provided. This comprehensive brain tumor data portal will allow for easy ad hoc querying across multiple domains, thus allowing physician-scientists to make the right decisions during patient treatments., THIS RESOURCE IS NO LONGER IN SERVICE. Documented on September 16,2025.
Proper citation: Repository of molecular brain neoplasia data (RRID:SCR_004704) Copy
South Texas Accelerated Research Therapeutics (START) directs clinical trials of novel anticancer agents using a high quality and innovative information technology infrastructure to ensure accurate and rapid clinical trials in a setting that emphasizes personalized and compassionate clinical care. START''s head office is located in San Antonio, Texas, in the heart of the South Texas Medical Center. With centers located in San Antonio, Texas and Madrid, Spain, START conducts the world''s largest Phase I medical oncology program putting more than 400 patients per year on Phase I trials. Patients travel from all over the world to participate in one or more of our Phase I drug trials. START consists of a team of highly trained physicians and staff with extensive experience in Phase I clinical trials research and are nationally recognized as thought leaders in cancer research and drug development. The mission of START is to accelerate the development of new anticancer drugs that will improve the quality of life and survival for patients with cancer. Our drug development program is not only furthering cancer research, but also offers hope to patients facing the toughest cancer battles.
Proper citation: South Texas Accelerated Research Therapeutics (RRID:SCR_004867) Copy
http://elderaffairs.state.fl.us/english/alz.php
A program that provides services to meet the needs of individuals with Alzheimer's disease, and similar memory disorders, and their families. The Alzheimer's Disease Initiative (ADI) of Florida provides caregiver respite services and support which include in-home, facility-based, emergency, and extended care for caregivers who serve patients with memory disorders. Additionally, the ADI includes services provided by Memory Disorder Clinics (MDCs).
Proper citation: State of Florida Alzheimer's Disease Initiative (RRID:SCR_004942) Copy
http://elderaffairs.state.fl.us/doea/BrainBank/index.php
THIS RESOURCE IS NO LONGER IN SERVICE. Documented on January 11, 2023. A service and research oriented network of statewide regional brain bank sites. The intent of the brain bank program is to study brains of persons clinically diagnosed with dementia and provide tissue for research after their deaths. Mt. Sinai Medical Center contracts annually with the State of Florida to operate the primary brain bank. Coordinators at regional brain bank sites in Orlando, Tampa and Pensacola assist in recruiting participants and act as liaisons between the brain bank and participant families. Alzheimer's disease respite care program providers, memory disorder clinics, and model day care programs also recruit brain bank participants. The Florida Brain Bank supports collaborative research programs related to Alzheimer's disease and other degenerative disorders of the brain.
Proper citation: Florida Brain Bank (RRID:SCR_004936) Copy
A research center associated with the University of Pittsburgh that specializes in the diagnosis of Alzheimer's disease and related disorders. The overall objective of the ADRC is to study the pathophysiology of Alzheimer's disease, with the aim of improving the reliability of diagnosis of Alzheimer's and developing effective treatment strategies. Current research foci emphasize neuropsychiatry and neuropsychology, molecular genetics and epidemiology, basic neuroscience, and structural and functional imaging that aid in the diagnosis and treatment of Alzheimer's disease. Specific services at the ADRC include: comprehensive diagnostic evaluation of patients with suspected Alzheimer's disease and other forms of dementia; evaluation of memory, language, judgment, and other cognitive abilities; and education and counseling for patients and families.
Proper citation: University of Pittsburgh Alzheimer Disease Research Center (RRID:SCR_008084) Copy
http://www.nia.nih.gov/research/dn
A funding resource that supports the research and training for understanding the structure and function of the aging nervous system, with an emphasis on studies involving Alzheimer's disease and age-related dementia. There is an emphasis on brain-behavior relationships. This program is composed of three branches: Neurobiology, Neuropsychology, and Dementias of Aging. The overall aim of this program is to understand the aging nervous system to minimize mental decline and improve the lives of older patients. This resource also includes links to sites for Alzheimer's disease (AD) studies that include: specimen repositories, genetic materials, bio-markers, data, policies on NIA and AD genetics sharing plans, and additional aging or other AD related links.
Proper citation: National Institute on Aging, Division of Neuroscience (RRID:SCR_008257) Copy
http://connectomics.org/viewer
Extensible, scriptable, pythonic software tool for visualization and analysis in structural neuroimaging research on many spatial scales. Employing the Connectome File Format, diverse data such as networks, surfaces, volumes, tracks and metadata are handled and integrated. The field of Connectomics research benefits from recent advances in structural neuroimaging technologies on all spatial scales. The need for software tools to visualize and analyze the emerging data is urgent. The ConnectomeViewer application was developed to meet the needs of basic and clinical neuroscientists, as well as complex network scientists, providing an integrative, extensible platform to visualize and analyze Connectomics data. With the Connectome File Format, interlinking different datatypes such as hierarchical networks, surface data, volumetric data is easy and might provide new ways of analyzing and interacting with data. Furthermore, ConnectomeViewer readily integrates with: * ConnectomeWiki: a semantic knowledge base representing connectomics data at a mesoscale level across various species, allowing easy access to relevant literature and databases. * ConnectomeDatabase: a repository to store and disseminate Connectome files.
Proper citation: ConnectomeViewer: Multi-Modal Multi-Level Network Visualization and Analysis (RRID:SCR_008312) Copy
http://www.biobankcentral.org/resource/wwibb.php
THIS RESOURCE IS NO LONGER IN SERVICE, documented on March 27, 2013. Web-based portal to connect all the constituencies in the global biobank community. The project seeks to increase the transparency and accessibility of the scientific research process by connecting researchers with an additional source of funding - microinvestments received from the broader online community. In exchange for these public investments, researchers will maintain research logs detailing the play-by-play progress made in their project, as well as publishing all of their data in a public database under a science commons license. These research projects, in turn, will serve to continually update a research-based neuroscience-based human brain & body curriculum. Biobanks are the meeting point of two major information trends in biomedical research: the generation of huge amounts of genomic and other laboratory data, and the electronic capture and integration of patient clinical records. They are comprised of large numbers of human biospecimens supplemented with clinical data. Biobanks when implemented effectively can harness the power of both genomic and clinical data and serve as a critical bridge between basic and applied research, linking laboratory to patient and getting to cures faster. As science and technology leaders work to address the many challenges facing U.S. biobanks logistical, technical, ethical, financial, intellectual property, and IT BioBank Central will serve as an accurate and timely source of knowledge and news about biorepositories and their role in research and drug development. The Web site also provides a working group venue, patient and public education programs, and a forum for international collaboration and harmonization of best practices.
Proper citation: BioBank Central (RRID:SCR_008645) Copy
http://www.msmc.com/neurosciences/wien-center-for-alzheimers-disease-memory-disorders
A joint program between Mount Sinai Medical Center and the University of Miami Department of Psychiatry that seeks an end to Alzheimer's disease and similar disorders through research, diagnosis, education and treatment. The goals are to improve memory and mental responsiveness of Alzheimer's patients, delay the onset of the disease and, ultimately, find a cure. The Wien Center typically conducts multidisciplinary initiatives utilizing clinical trials.
Proper citation: Wien Center For Alzheimer's Disease and Memory Disorders (RRID:SCR_008755) Copy
http://academicdepartments.musc.edu/aging/
A center dedicated to research, service, and education concerning aging. MUSC primarily promotes the health, increased longevity, and improved quality of life of senior South Carolinians. This organization does such through the establishment of a national translational research program about aging, the development of a comprehensive/coordinated system of health care delivery for older individuals, and providing health education and outreach to students, faculty members, practicing health providers and the overall public. This center consists of several different research programs, including the Movement Disorder program, Stroke program, Alzheimer's program, Biology of Aging program, Outreach and Education program, and the Clinical Geriatric program.
Proper citation: Medical University of South Carolina Center on Aging (RRID:SCR_008825) Copy
http://www.mssm.edu/research/centers/alzheimers-disease-research-center/
A research facility and clinical program that is dedicated to the study and the treatment of both normal aging and Alzheimer's disease. This facility will accommodate requests for its resources (for example, data or tissue) from investigators that are not funded by the ADRC. Their team is composed of experts in geriatrics, geriatric psychiatry and psychology, neurology, pathology, and radiology. All team members work to provide services to those with memory disorders. This center sponsors educational programs for healthcare professionals and community groups. Data from the ADRC cores are available to all ADRC investigators after approval from the PI who collected the data. Data generated by the ADRC cores are communicated to the National Alzheimer's Coordinating Center (NACC) and can be available through them. Tissue can be distributed after approval of the Tissue Allocation Committee, and can be used for further research.
Proper citation: Mount Sinai Alzheimer's Disease Research Center (RRID:SCR_008780) Copy
http://depts.washington.edu/adrcweb/
Research center investigating the basic mechanisms underlying the development of Alzheimer's disease and related disorders, directing particular attention to biomarkers and experimental new treatments. They also continue to search for genetic risk factors underlying Alzheimer's disease (AD). Their main priorities are to find causes, effective treatments, and prevention strategies. Their investigators also are partnering with other Alzheimer's Centers across the country to evaluate promising new medications and other treatments for AD. The ultimate goal of their basic and clinical studies is to improve patient care and function, and improve the quality of life for both the patient and the caregiver. ADRC Cores: * Administration * Clinical Core * Satellite Core * Data Management & Biostatistics * Neuropathology Core * Education & Information Transfer * Genetics
Proper citation: University of Washington Alzheimers Disease Research Center (RRID:SCR_008814) Copy
http://www.cancerimagingarchive.net/
Archive of medical images of cancer accessible for public download. All images are stored in DICOM file format and organized as Collections, typically patients related by common disease (e.g. lung cancer), image modality (MRI, CT, etc) or research focus. Neuroimaging data sets include clinical outcomes, pathology, and genomics in addition to DICOM images. Submitting Data Proposals are welcomed.
Proper citation: Cancer Imaging Archive (TCIA) (RRID:SCR_008927) Copy
THIS RESOURCE IS NO LONGER IN SERVICE, documented on February 07, 2013. A multidisciplinary neuroscience laboratory in which basic and clinical scientists work side by side exploring neural mechanisms and models of mental and cognitive function and of neuropsychiatric illness. Experiments are performed at many levels of inquiry, from basic molecular biology of the gene to clinical examinations of patients. A major area of investigation of this laboratory is the genetic mechanisms implicated in the pathogenesis of schizophrenia and its treatment. The laboratory is organized as a multi-disciplinary team of investigators with a common mission: to identify and fully characterize basic genetic and neurobiological mechanisms of schizophrenia and related cognitive and emotional disorders. The various components of this effort are centered various different units or divisions represented by groups of investigators, at various levels of training and experience, working on related experiments. The Director of the Branch and of the Genes, Cognition and Psychosis Program (GCAP) is Daniel R. Weinberger, M.D. The CBDB is the principle research laboratory in the created (2003) Genes, Cognition, and Psychosis Program (GCAP) of the NIMH. After twelve years of residing on the pastoral grounds of St. Elizabeths Hospital, in Southeast Washington, CBDB moved back to the main NIH campus in Bethesda, Maryland in 1998. While the unique setting of St. Elizabeths is irreplaceable, we have occupied beautiful new laboratories and clinic spaces that were created for us, and we are in the mainstream of NIH life., THIS RESOURCE IS NO LONGER IN SERVICE. Documented on September 16,2025.
Proper citation: NIMH Intramural Research Program Clinical Brain Disorders Branch (RRID:SCR_008728) Copy
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
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
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
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
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
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