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http://linux1.softberry.com/spldb/SpliceDB.html

Database of canonical and non-canonical mammalian splice sites. The information about verified splice site sequences for canonical and non-canonical sites is presented with the supporting evidence. Weight matrices were built for the major splice groups, which can be incorporated into gene prediction programs.

Proper citation: SpliceDB (RRID:SCR_006262) Copy   

•   Source: SciCrunch Registry

https://www.accordtrial.org/public

Study testing whether strict glucose control lowers the risk of heart disease and stroke in adults with type 2 diabetes. In addition the study is exploring: 1) Whether in the context of good glycemic control the use of different lowering lipid drugs will further improve these outcomes and 2) If strict control of blood pressure will also have additional beneficial effects on reducing cardiovascular disease. The design was a randomized, multicenter, double 2 X 2 factorial trial in 10,251 patients with type 2 diabetes mellitus. It was designed to test the effects on major CVD events of intensive glycemia control, of fibrate treatment to increase HDL-cholesterol and lower triglycerides (in the context of good LDL-C and glycemia control), and of intensive blood pressure control (in the context of good glycemia control), each compared to an appropriate control. All 10,251 participants were in an overarching glycemia trial. In addition, one 2 X 2 trial addressed the lipid question in 5,518 of the participants and the other 2 X 2 trial addressed the blood pressure question in 4,733 of the participants. The glycemia trial was terminated early due to higher mortality in the intensive compared with the standard glycemia treatment strategies. The results were published in June 2008 (N Eng J Med 2008;358:2545-59). Study-delivered treatment for all ACCORD participants was stopped on June 30, 2009, and the participants were assisted as needed in transferring their care to a personal physician. The lipid and blood pressure results (as well as the microvascular outcomes and eye substudy results) were published in 2010. All participants are continuing to be followed in a non-treatment observational study.

Proper citation: ACCORD (RRID:SCR_009015) Copy   

•   Source: SciCrunch Registry

https://neuinfo.org/mynif/search.php?q=nlx_144644&t=indexable&list=cover&nif=nlx_144509-1

Dataset from an investigation of biochemical evidence of myocardial strain, oxidative stress, and cardiomyocyte injury in 55 acute KD subjects (30 with paired convalescent samples), 54 febrile control (FC), and 50 healthy control (HC) children by measuring concentrations of cardiovascular biomarkers. NT-proBNP and sST2 were elevated in acute KD subjects and correlated with impaired myocardial relaxation. These findings, combined with elevated levels of cTnI, suggest that both cardiomyocyte stress and cell death are associated with myocardial inflammation in acute KD.

Proper citation: Kawasaki Disease Dataset2 (RRID:SCR_008839) Copy   

•   Source: SciCrunch Registry

http://clinicaltrials.gov/show/NCT00059202

Multi-center, placebo-controlled trial of ursodiol in primary sclerosing cholangitis (PSC). A total of 150 patients with previously untreated PSC without cirrhosis were randomly assigned to receive high doses of ursodiol (20-25 mg/kg/day) or placebo for two years. Patients underwent medical evaluation, endoscopic retrograde cholangiography, and liver biopsy before randomization and again at two-year intervals. The endpoints of therapy were progression of hepatic fibrosis, liver decompensation, liver transplantation, or death. The treatment phase of the study was stopped for futility in June 2008; however, patients continue to be followed. Ongoing mechanistic studies are underway.

Proper citation: High-dose Ursodiol Therapy of Primary Sclerosing Cholangitis (RRID:SCR_006772) Copy   

•   Source: SciCrunch Registry

http://clinicaltrials.gov/ct2/show/study/NCT00248638

Multi-center, double-blind, placebo-controlled, intent-to-treat Phase III trial, designed to determine the effect of parenteral glutamine (GLN) dipeptide on important clinical outcomes in patients requiring surgical intensive care unit (SICU) care and parenteral nutrition (PN) after cardiac, vascular, or intestinal surgery. Patients who required PN and SICU care will receive either standard glutamine (GLN)-free PN (STD-PN) or isocaloric, isonitrogenous alanyl-glutamine dipeptide (AG)-PN until enteral feedings are established. The study will determine whether AG-PN decreases hospital mortality, nosocomial infection and other important indices of morbidity and will obtain mechanistically relevant observational data in the subjects on whether AG-PN a) increases serial blood concentrations of glutathione (GSH), heat shock proteins (HSP)-70 and -27, and glutamine; b) decreases the serum presence of the bacterial products flagellin and lipopolysaccharide (LPS) and the adaptive immune response to these mediators; and c) improves key indices of innate and adaptive immunity.

Proper citation: Efficacy and Mechanisms of Glutamine Dipeptide in the Surgical Intensive Care Unit (RRID:SCR_006806) Copy   

•   Source: SciCrunch Registry

http://www.icpsr.umich.edu/icpsrweb/NACDA/studies/09813/version/1

A longitudinal study which follows the cohort of current residents and discharged residents sampled from the 1985 National Nursing Home Survey (NNHS), thus permitting study of nursing home and hospital utilization over time. The study was conducted in three waves. To supplement the current and discharged resident components, the 1985 NNHS included a new component - the Next-of-Kin (NOK). The NOK, using a Computer Assisted Telephone Interviewing (CATI) system, was designed to collect information about current and former nursing home residents that is not generally available from patient records or other sources in the nursing home. The NNHSF obtains additional information on a portion of the residents for whom a Current Resident Questionnaire (CRQ) or a Discharged Resident Questionnaire (DRQ) was completed. In September 1994, the NNHSF Mortality Public Use Data Tape was released, covering the years 1984-1990. It contains the multiple cause-of-death information for 6,507 subjects from the NNHSF found to be deceased after linking and matching of files with the National Death Index. Information on the mortality tape includes the date of death, region of occurrence and residence, etc. All NNHSF tapes include a patient identification number common across files to allow linkage among them. Data Availability: Public Use data tapes for each wave and the mortality tape are available through the National Technical Information Office (NTIS), NACDA and the ICPSCR at the University of Michigan. The 1985 survey tape includes eight files: the facility questionnaire, nursing staff questionnaire, current resident questionnaire, discharged resident questionnaire, expense questionnaire, nursing staff sampling list, current resident sampling list, discharged resident sampling list. The next-of-kin questionnaire is available on a separate tape. * Dates of Study: 1987-1990 * Study Features: Longitudinal * Sample Size: ** 1987: 6,001 (Wave I) ** 1988: 3,868 (Wave II) ** 1990: 3,041 (Wave III) Links: * Wave I (ICPSR): http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/09813 * Wave II (ICPSR): http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/09838 * Wave III (ICPSR): http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/06142

Proper citation: National Nursing Home Survey Follow-Up (RRID:SCR_008948) Copy   

•   Source: SciCrunch Registry

http://clinicaltrials.gov/show/NCT00271999

Randomized controlled clinical trial where subjects will be randomized to conventional hemodialysis delivered three days per week home arm or to the six times per week nocturnal home hemodialysis arm which will follow any dialysis prescription provided their prescribed standardized Kt/V is at least 4.0 and treatment time is at least 6.0 hours, six times per week. Subjects were recruited from dialysis units associated with designated Clinical Centers in the U.S. and Canada and followed for 12 months. Primary Outcome Measures: * composite of 12 month mortality and the change over 12 months in left ventricular mass by cine-MRI, * a composite of 12 month mortality and the change over 12 months in the SF-36 RAND physical health composite Secondary Outcome Measures: * cardiovascular structure/funct (change in LV mass over 12 mos), health-related QoL/phys funct (change over 12 mos in PHC), * depression / dis burden (change over 12 mos in Beck Depression Inv.), nutrition (change over 12 mos in serum albumin, cognitive funct (change over 12 mos in TrailMaking Test B), mineral metabolism (change over 12 mos in aveg pre-dialysis serum phosphorus), * clin events (rate of non-access hospital or death * hypertension, anemia

Proper citation: Frequent Hemodialysis Network Nocturnal Trial (RRID:SCR_007014) Copy   

•   Source: SciCrunch Registry

http://gero.usc.edu/CBPH/nujlsoa/index.htm

Longitudinal data set of a nationally representative sample of the population aged 65 and over in Japan, comparable to that collected in the US and other countries. The first two waves of data are now available to the international research community. The sample is refreshed with younger members at each wave so it remains representative of the population at each wave. The study was designed primarily to investigate health status of the Japanese elderly and changes in health status over time. An additional aim is to investigate the impact of long-term care insurance system on the use of services by the Japanese elderly and to investigate the relationship between co-residence and the use of long term care. While the focus of the survey is health and health service utilization, other topics relevant to the aging experience are included such as intergenerational exchange, living arrangements, caregiving, and labor force participation. The initial questionnaire was designed to be comparable to the (US) Longitudinal Study of Aging II (LSOAII), and to the Asset and Health Dynamics Among the Oldest Old (AHEAD, a pre-1924 birth cohort) sample of the Health and Retirement Study (HRS), which has now been merged with the HRS. The sample was selected using a multistage stratified sampling method to generate 340 primary sampling units (PSUs). The sample of individuals was selected for the most part by using the National Residents Registry System, considered to be universal and accurate because it is a legal requirement to report any move to local authorities within two weeks. From each of the 340 PSUs, 6-11 persons aged 65-74 were selected and 8-12 persons aged 75+ were sampled. The population 75+ was oversampled by a factor of 2. Weights have been developed for respondents to the first wave of the survey to reflect sampling probabilities. Weights for the second wave are under development. With these weights, the sample should be representative of the 65+ Japanese population. In fall 1999, 4,997 respondents aged 65+ were interviewed, 74.6 percent of the initial target. Twelve percent of responses were provided by proxies, because of physical or mental health problems. The second wave of data was collected in November 2001. The third wave was collected in November 2003. Questionnaire topics include family structure, and living arrangements; subjects'''' parents/spouse''''s parents/children; socioeconomic status; intergenerational exchange; health behaviors, chronic conditions, physical functioning; activities of daily living and instrumental activities of daily living; functioning in the community; mental health depression measures; vision and hearing; dental health; health care and other service utilization. A CD is available which include the codebook and data files for the first and second waves of the national sample. The third wave of data will be released at a later date. * Dates of Study: 1999-2003 * Study Features: Longitudinal, International * Sample Size: ** 4,997 Nov/Dec 1999 Wave 1 ** 3,992 Nov 2001 Wave 2 ** Nov 2003 Wave 3 Link: * ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/00156

Proper citation: Nihon University Japanese Longitudinal Study of Aging (RRID:SCR_008974) Copy   

•   Source: SciCrunch Registry

http://www.nitrc.org/projects/bstp/

A free collection of MRI brain images for testing segmentation algorithms. It is available for download to assess the accuracy, reproducibility and sensitivity of MRI segmentation software. It includes data from infants and adults as well as patients with Alzheimer's disease.

Proper citation: Brain Segmentation Testing Protocol (RRID:SCR_009445) Copy   

•   Source: SciCrunch Registry

http://www.nitrc.org/projects/eegdataanimal

A collection of 32-channel data from 14 subjects (7 males, 7 females) acquired using the Neuroscan software. Subjects are performing a go-nogo categorization task and a go-no recognition task on natural photographs presented very briefly (20 ms). Each subject responded to a total of 2500 trials. Data is CZ referenced and is sampled at 1000 Hz (total data size is 4Gb; more details are given later).

Proper citation: EEG human categorization data (RRID:SCR_009468) Copy   

•   Source: SciCrunch Registry

http://coordinatingcenter.ucsf.edu/pride/

Randomized controlled trial being conducted at two clinical centers in the United States to learn more about the effects of weight loss on urinary incontinence. About 330 overweight women aged 30 or older will participate and will be followed for 18 months. Efficacy of weight reduction as a treatment for urinary incontinence will be examined at 6 months following the intensive weight control program, and the sustained impact of the intervention will be examined at 18 months. To increase the maintenance of weight reduction and facilitate evaluation of the enduring impact of weight loss on urinary incontinence, they propose to study a motivation-based weight maintenance program. At the end of the intensive weight control program, women randomized to the weight loss program will be randomized to either a 12-month skill-based maintenance intervention or to a motivation-based maintenance intervention. The maintenance interventions maximize the potential for sustained weight loss and will allow them to determine if long-term weight reduction will produce continued improvement in urinary incontinence.

Proper citation: Program to Reduce Incontinence by Diet and Exercise (RRID:SCR_009018) Copy   

•   Source: SciCrunch Registry

http://www.transformproject.eu/portfolio-item/d6-2-clinical-research-information-model/

A clinical research information model for the integration of clinical research covering randomized clinical trials (RCT), case-control studies and database searches into the TRANSFoRm application development. TRANSFoRm clinical research is based on primary care data, clinical data and genetic data stored in databases and electronic health records and employs the principle of reusing primary care data, adapting data collection by patient reported outcomes (PRO) and eSource based Case Report Forms. CRIM was developed using the TRANSFoRm clinical use cases of GORD and Diabetes. Their use case driven approach consisted of three levels of modelling drawing heavily on the clinical research workflow of the use cases. Different available information models were evaluated for their usefulness to represent TRANSFoRm clinical research, including for example CTOM of caBIG, Primary Care Research Object Model (PRCOM) of ePCRN and BRIDG of CDISC. The PCROM model turned out to be the most suitable and it was possible to extend and modify this model with only 12 new information objects, 3 episode of care related objects and 2 areas to satisfy all requirements of the TRANSFoRm research use cases. Now the information model covers Good Clinical Practice (GCP) compliant research, as well as case control studies and database search studies, including the interaction between patient and GP (family doctor) during patient consultation, appointment, screening, patient recruitment and adverse event reporting.

Proper citation: TRANSFoRm Clinical Research Information Model (RRID:SCR_003889) Copy   

•   Source: SciCrunch Registry

http://www.ucsd.tv/stein/

Videos and podcasts presenting the latest innovative research being conducted by the Stein Institute for Research on Aging medical faculty, with the aim of promoting healthy aging. Additionally, many of the public lectures from the Public Lecture Series are also available on UCSD-TV's website video on demand programming. The Lecture series allows affiliated faculty members of the Stein Institute for Research on Aging and other scientists from the UCSD School of Medicine, as well as individuals from surrounding academic and research institutions, to present the latest findings in their respective fields of expertise and share their present work with the general community. All of these lectures focus on topics related to healthy aging or age-related diseases.

Proper citation: Stein Institute for Research on Aging Video Archive (RRID:SCR_003761) Copy   

•   Source: SciCrunch Registry

https://sites.google.com/site/p2tconsortium/

A three-member pharmaceutical industry consortium that aims to provide a new platform to improve access to information about clinical trials for patients and providers. The platform aims to enhance the existing clinicaltrials.gov by providing more detailed and patient-friendly information about available trials and embedding a machine-readable target health profile to improve the ability of healthcare software to match individual health profiles with applicable clinical trials. Using clinicaltrials.gov as its foundation and Eli Lilly''''s Application Programming Interface (API), the consortium is focused on creating an open platform to make this data more amenable to patients and providers, as well as creating an opportunity to integrate a patient''''s electronic health record into the clinical trial matching service. This feature will allow patients to search for trials using their own Blue Button data. The following features are planned add-ons to clinicaltrials.gov: * Target Profile is a machine readable query, that can be executed against an electronic file (or record) with patient health data such as an Electronic Health Record (EHR), an Electronic Medical Record (EMR) or Personally Controlled Health Record (PCHR) * Augmented Content is public, IRB approved information about the study that has not been published on clinicaltrials.gov, and that is shared with / targeted for patients with a matching Target Profile. The following are the incremental goals of the consortium: * Advancement of the Lilly API platform to support read/write interaction and additional data objects and information. * The initial 3 sponsor organizations - Lilly, Pfizer and Novartis - will upload Target Profiles for a select set of clinical trials. A Target Profile is a machine interpretable description of the characteristics of patients who may qualify for that trial i.e. a query that can be executed against a patient''''s electronic health record or personal health record. Additionally, sponsors of clinical research studies will also be able to upload Augmented Content to the Lilly Platform to supplement information on clinicaltrials.gov with additional, patient-focused information about the study, e.g., a study brochure and practical information on how to contact investigational sites. * A matching service, developed by Corengi, will compare Target Profiles to a de-dentified personally controlled health record (PCHR), represented by patient''''s Blue Button Plus CCDA XML document. * Integration into a patient community platform from Avado for providing the patient PCHR and presenting the results of the match service. The patient will be able to explore the respective matching studies for additional information and next steps such as contacting a nearby investigator clinic or hospital. The first demo of the prototype was made available on June 2014, built on a database of anonymized patient health records from different clinical research studies sponsored by Lilly, Novartis, and Pfizer. Other website: http://portal.lillycoi.com/

Proper citation: Patients to Trials Consortium (RRID:SCR_003877) Copy   

•   Source: SciCrunch Registry

http://aging.ucsd.edu/

Portal dedicated to the development and application of the latest advances in biomedical and behavioral science knowledge to issues of successful, healthy aging and the prevention and reduction of the burden of disability and disease in late life. Additionally, they provide numerous grants to junior faculty, as well as education programs for doctors and researchers through monthly Grand Rounds. From studying memory to identifying genes with important roles in aging, Stein Institute scientists are continuously pushing the boundaries of knowledge. One of their most promising ongoing projects is the Successful AGing Evaluation (SAGE) Study. SAGE is the only large-scale study on successful aging that considers the impact of positive psychological traits, such as resilience and wisdom, in addition to biological factors, providing a much more complete picture of older adults. Their monthly public lectures presented by renowned physicians and scientists are broadcast on UCSD-TV and have been viewed more than one billion times. This year they partnered with the Clinical and Translational Research Institute and the Osher Lifelong Learning Institute to organize Making Sense of Science, a course for older adults interested in science and health. In addition, They distribute a free monthly newsletter and work extensively with the community, participating in numerous events and conferences.

Proper citation: Stein Institute for Research on Aging (RRID:SCR_003759) Copy   

•   Source: SciCrunch Registry

http://www.nraa.org/

A nonprofit organization representing dialysis facilities and centers throughout the United States. It supports members from all types of providers including freestanding, hospital-based and national chains through the weekly e-mail newsletter, Renal Watch, the Annual Meeting, periodic workshops and other meetings. NRAA members include dialysis provider companies and management consulting companies and other companies involved in the End Stage Renal Disease (ESRD) industry and supportive of the purposes of NRAA. Individuals not directly employed or otherwise involved in companies that are NRAA members may join as individual Associate Members. The purposes for which the NRAA is organized are as follows: # To provide renal administrators the opportunity for gaining continuing education, obtaining peer recognition and expanding development in the profession. # To promote and encourage education and training for renal administrators. # To recognize individuals who have done or are doing noteworthy service in the field of renal administration. # To educate the public and members of governing bodies of health care organizations to understand the issues surrounding the practice of renal administration. # To represent the professional interests of renal administrators as a national representative spokesperson for the development and implementation of public policy. # To act as a resource on local and national ESRD issues.

Proper citation: National Renal Administrators Association (RRID:SCR_003991) Copy   

•   Source: SciCrunch Registry

http://www.nimh.nih.gov/educational-resources/index.shtml

A portal to educational resources.

Proper citation: NIMH Educational Resources (RRID:SCR_004045) Copy   

•   Source: SciCrunch Registry

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

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

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

•   Source: SciCrunch Registry

http://www.rsnhope.org/

A nonprofit, patient-focused, patient-run organization that provides non-medical services to those affected by chronic kidney disease (CKD). RSN strives to help patients develop their personal coping skills, special talents, and employability by educating and empowering them and their family members to take control of the course and management of the disease. RSN plays a vital role in providing lawmakers and policymakers with the patient''s perspective on the needs and capabilities of people with CKD.

Proper citation: Renal Support Network (RRID:SCR_004049) Copy   

•   Source: SciCrunch Registry

http://nephcure.org/

Nonprofit organization committed exclusively to support research seeking the cause of the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome, improve treatment and find a cure. NephCure Kidney International is: * Committed to funding research around the globe that will continue to move us closer to an improved treatment and a cure. * The primary source of information on Nephrotic Syndrome and FSGS. * Leading the charge for legislative action to provide more federal funding for research into Nephrotic Syndrome and FSGS. * Working to attract researchers to this field. * Educating the public and raising awareness about Nephrotic Syndrome and FSGS.

Proper citation: NephCure Kidney International (RRID:SCR_003993) Copy   

•   Source: SciCrunch Registry