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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   

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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   

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http://www.ctsasharecenter.org/

THIS RESOURCE IS NO LONGER IN SERVICE. Documented on December 5th, 2022. An open-source platform designed for organic sharing and collaborative work, it provides the CTSA Consortium with a convenient web platform for networking, exchanging resources, and collaborating. Created and maintained as a tool for the CTSA Consortium, it can be implemented by organizations, either in a standalone installation or via cloud-based hosting provided by Zaloni, Inc. The installation package is available at http://www.getsharecenter.org/, including a package optimized for research networks. ShareCenter integrates with VIVO and is a demonstration site for the new CTSAconnect project that will coalesce the VIVO and eagle-i ontologies. CTSA personnel can use ShareCenter to connect and share with each other, while CTSAs can (a) set up the open-source package, which includes a version optimized for research networks or (b) easily create their own private ''''channel'''' on CTSA ShareCenter. * Search for resources and people. * Contribute your institute''''s gems. * Look cool for being a top contributor! ShareCenter Features * Easy search and access: Find content easily using faceted search. * Team based workspaces: Easily create and manage private collaboration spaces. * Connect with other users and follow their activities: Connect with other CTSA members. Follow their activities. * Subscriptions and Notifications: Subscribe to interesting content and receive notifications when your requests are filled. * Sophisticated categorization of information: Content can be categorized by key function areas, taxonomy and keywords. * Incentives for sharing: Reward users for sharing resources, ideas, expertise, skills.

Proper citation: CTSA ShareCenter (RRID:SCR_005248) Copy   

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http://www.nature.com/naturejobs/science/

Search for the widest range of science jobs with thousands of vacancies advertised globally on the site. Employers range from top international pharmaceutical and biotechnology companies to highly respected academic and government institutions. Job seekers can find a wide range of scientific career information and news as well as expert advice, all free to access. What''s more, employers can post jobs for free.

Proper citation: Naturejobs (RRID:SCR_005151) Copy   

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http://phenotype.mc.vanderbilt.edu/

Collaborative environment of building and validating electronic phenotype algorithms using electronic medical records (EMRs) and natural language processing (NLP) for use in genome-wide association studies (GWAS). On this site you can: View existing algorithms, Enter or create new algorithms, Collaborate with others to create or review algorithms, View implementation details for existing algorithms. The Electronic Medical Records and Genomics Network (eMERGE) has investigated whether data captured through routine clinical care using electronic medical records (EMRs) can identify disease phenotypes with sufficient positive and negative predictive values for use in genome-wide association studies (GWAS). Most EMRs captured key information (diagnoses, medications, laboratory tests) used to define phenotypes in a structured format; in addition, natural language processing has also been shown to improve case identification rates. PheKB is an outgrowth of that validation effort. Phenotype algorithms can be viewed by data modalities or methods used: CPT codes, ICD 10 codes, ICD 9 codes, Laboratories, Medications, Vital Signs, Natural Language Processing Algorithms can also be viewed by: * Implementation results (positive predictive value, sensitivity, publications) * Institution * Work Group

Proper citation: PheKB (RRID:SCR_005292) Copy   

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http://www.massgeneral.org/children/services/treatmentprograms.aspx?id=1614

The Lurie Center for Autism is a highly successful program designed to evaluate and treat children and adults with a wide variety of developmental and handicapping conditions. Our mission is to provide the highest quality clinical, social and support services to those diagnosed with autism, pervasive developmental disorders and other developmental disabilities. The Lurie Center for Autism is unique because of the population it serves and because it uses a multidisciplinary approach that begins with comprehensive medical evaluations and extends to supporting the well-being of patients and families. Nurses, social workers, speech pathologists, occupational therapists, physical therapists, neuro-psychologists, special education professionals and family members are involved in the treatment processes in addition to physicians. Each has a depth of expertise in his/her respective field. The team, as a unit, plays an integral role in the continuum of care for individuals diagnosed with developmental disabilities. Our services and therapies include: * Extensive diagnostic evaluations * Medical, cognitive and behavioral interventions including speech and language * Speech therapy, occupational therapy, occupational with sensory integration therapy and physical therapy; psychological evaluation and counseling; * Parent skills training and family empowerment * Referral support for additional medical and educational resources at locations near each patient''s home and throughout the New England region The Lurie Center for Autism is committed to improving the medical, social and psychological well-being of children, adolescents, adults and families. To this end, our goals and objectives are to: * Provide a stable, consistent and structured environment within a medical context * Provide opportunities for each individual to achieve * Develop self control, social skills and self esteem in each individual * Support and educate families in order to transfer the learned skills to home, school, work and community environments * Provide teaching to physicians and professionals in training and to pursue research related to the treatment and causes of autism, pervasive developmental disorders and other devlopmental disorders of the central nervous system

Proper citation: Lurie Center for Autism (RRID:SCR_005456) Copy   

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http://caps.ucsf.edu/

Established in 1986, the Center for AIDS Prevention Studies (CAPS) at the University California, San Francisco (UCSF) is the world''s largest research center dedicated to social, behavioral, and policy science approaches to HIV. The mission of the CAPS is to conduct research to prevent new HIV infections, improve health outcomes among those infected, and reduce disparities. This is how we do it: * CAPS provides core support for multidisciplinary and high-impact HIV research, enhances the excellence of research projects, trains a new generation of HIV scientists, and assists implementing partners. * Our Administrative Core provides strong leadership and management to stimulate innovative research and ensure scientific rigor and sound fiscal operations. * Our Developmental Core fosters innovative, high-impact, multidisciplinary HIV research by providing funds for innovative pilot work, sponsoring training and education, and ensuring the scientific excellence of research. * Our Methods Core provides comprehensive methodological training and consultation in research design, qualitative and quantitative analysis, and state-of-the-art data collection and management. * Our Policy and Ethics Core stimulates and supports policy-relevant research, identifies and analyzes the policy and ethics implications of research, and ensures the highest ethical conduct of research. * Our Technology and Information Exchange (Domestic Response) Core responds to the domestic epidemic by disseminating information, fostering community collaborative research, providing technical assistance and capacity-building to community-based organizations, and learning from community expertise. * Our Global Response Core responds to the global epidemic by fostering collaborative research with scientists in developing countries, completing and disseminating Cochrane Collaborative scientific reviews, and providing technical assistance, capacity building, and an evidence base to implementing partners.

Proper citation: UCSF Center for AIDS Prevention Studies (CAPS) (RRID:SCR_005647) Copy   

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http://www.isrctn.com

A primary clinical trial registry which houses proposed, ongoing, and completed clinical research studies. An ISRCTN is a simple numeric system for the unique identification of randomized controlled trials worldwide. The registry provides content validation and curation and the unique identification number necessary for publication. Submitted studies range from cancer to urological diseases.

Proper citation: ISRCTN Registry (RRID:SCR_006087) Copy   

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http://www.dartmouth.edu/~rswenson/NeuroSci/index.html

On line textbook of basic clinical and functional neuroscience, developed by Rand S. Swenson, D.C., M.D., Ph.D., Dartmouth Medical School Chapter Index * Introduction * Cellular organization * Peripheral nervous system * Development * Spinal cord * Brain stem organization * Sensory systems * Motor systems * Limbic system * Thalamic organization * Cerebral cortical organization * Nutrition of the brain * Conclusions

Proper citation: Review of Clinical and Functional Neuroscience (RRID:SCR_005964) Copy   

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http://www.human-phenotype-ontology.org/

Provides standardized vocabulary of phenotypic abnormalities encountered in human disease. Structured and controlled vocabulary for phenotypic features encountered in human hereditary and other disease. HPO is being developed in collaboration with members of OBO Foundry (Open Biological and Biomedical Ontologies), and logical definitions for HPO terms are being developed using PATO and a number of other ontologies including FMA, GO, ChEBI, and MPATH.

Proper citation: Human Phenotype Ontology (RRID:SCR_006016) Copy   

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http://www.jsmf.org/

Supports research and scholarship to improve the quality of life by providing funding for grants in three program areas: studying complex systems, understanding human cognition, and mathematical and complex systems approaches for brain cancer. Types of awards include Fellowship Awards, Scholar Awards, and Collaborative Awards. * Studying Complex Systems: This program supports scholarship and research directed toward the development of theoretical and mathematical tools that can be applied to the study of complex, adaptive, nonlinear systems. It is anticipated that research funded in this program will address issues in fields such as biology, biodiversity, climate, demography, epidemiology, technological change, economic development, governance, or computation. * Understanding Human Cognition: This program supports research studying how neural systems are linked to and support cognitive functions and how cognitive systems are related to an organism's (preferably human) observable behavior. Studies with model organisms should justify why such models were selected and how data obtained from models advances our understanding of human cognition. * Mathematical & Complex Systems Approaches for Brain Cancer: (Collaborative Activity Awards grant type only.) Despite some recent cause for optimism for advancing the clinical treatment of brain cancers, for many patients brain tumor remains a devastating diagnosis. Progress against this disease has been stymied by limited understandings of the molecular, metabolic, and physiological characteristics of human brain cancers across multiple temporal and spatial scales and by the failure of many preclinical models to predict patient responses.

Proper citation: James S. McDonnell Foundation (RRID:SCR_006341) Copy   

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http://www.areds2.org

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

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

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https://www.researchmatch.org/

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

Proper citation: ResearchMatch (RRID:SCR_006387) Copy   

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

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

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

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

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

Proper citation: Endocrine Society (RRID:SCR_006449) Copy   

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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   

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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   

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http://btris.nih.gov

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

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

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

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

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

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