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http://www.tmf-ev.de/BiobankenRegisterEN/Registry.aspx?udt_2021_param_detail=72
It is the aim of the SepNet initiative to establish a central facility, essential to data and sample quality and homogeneity, that comprises a structured and easily accessible sample bank with probes of homogeneous quality originating from a well-characterized patient population enrolled in independent, innovative and internationally competitive prospective clinical sepsis trials. The SepNetBiobank is a core facility of SepNet. The object of this central sample resource is to organize and handle all relevant aspects of sampling, storage and delivery of samples in the SepNet collaboration to ensure homogeneity of the samples in terms of specimen quality and maintaining sampling standards. This will be achieved through central handling of samples collected in peripheral nationwide 17 regional centers and an additional 36 associated centers according to an agreed sampling scheme and pre-set standards for sample quality, sample handling and banking; quality assurance and all relevant parts of sample handling will be in the hands of the core unit, minimizing pre-analytical steps in the heterogeneous environment of the different regional centers. In the next few months a fully automated sample storage system will be implemented that allows handling of more than 200.000 individual aliquots expected after completion of the different ongoing and planned SepNet Trails. In the next six months a fully automated -80 degree C sample storage system will be implemented. After completion of the plannend and ongoing SepNet trials more than 59.710 expected primary samples (218.040 aliquots) will be stored in this system. This outstanding sample resource will provide the basis for scientific projects aming at improving patient care with sepsis e.g. advancement in diagnostics, risk stratification, therapy and outcome.
Proper citation: SepNet Central Sample Bank (RRID:SCR_004543) Copy
http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/UCM380961.pdf
An electronically administered patient-reported outcome (PRO) measure that is a qualified measure of symptoms of acute bacterial exacerbation of chronic bronchitis in patients with chronic obstructive pulmonary disease (ABECB-COPD), for use in phase 2 trials. Refer to the proposed context of use, http://www.fda.gov/downloads/Drugs/DevelopmentApprovalProcess/DrugDevelopmentToolsQualificationProgram/UCM399682.pdf. Its intent to quantify frequency, severity, and duration of acute exacerbations in clinical trials of COPD including those with chronic bronchitis. It is designed as an electronic diary made up of fourteen items to be completed by the patient each evening just prior to bedtime. (An item-reduction statistical analysis narrowed the questions from 23 to 14.) For more information see, http://www.fda.gov/downloads/Drugs/DevelopmentApprovalProcess/DrugDevelopmentToolsQualificationProgram/UCM386248.pdf
Proper citation: Exacerbations of Chronic Pulmonary Disease Tool (RRID:SCR_003718) Copy
Repository of person centered measures that evaluates and monitors physical, mental, and social health in adults and children.
Proper citation: Patient-Reported Outcomes Measurement Information System (RRID:SCR_004718) Copy
http://www.kcl.ac.uk/medicine/research/divisions/diiid/centres/pii/biobank/index.aspx
Centralized specimen archiving and molecular analysis facility that assists researchers wishing to undertake cohort-based projects in areas such HIV/AIDS, HCV infection or MRSA. Its aim is to make medical research easier, more efficient and faster to perform. The IDB collects valuable clinical samples from patients with infections who are attending their partner NHS-Trust clinics. Their core collections include blood samples from patients infected with human immunodeficiency virus (HIV), hepatitis B (HBV) & hepatitis C (HCV) viruses or methicillin resistant Staphylococcus aureus (MRSA). Blood samples are separated so that patients������?? DNA, plasmas (cell-free blood) and lymphocytes (white blood cells) can be frozen into a comprehensive library. Medical researchers can access complete sets of samples to answer important clinical questions, if their research project is approved by the IDB''s Management Committee. For this reason they are actively recruiting ''medically interesting'' patients who are infected with HIV, for example: those who remain well ������?? despite being infected for many years; others who are exposed to HIV but remain uninfected; others who develop AIDS very quickly; and, those who are in the process of sero-converting.
Proper citation: Kings College London Infectious Diseases BioBank (RRID:SCR_004827) Copy
http://ki.se/ki/jsp/polopoly.jsp?d=29328&a=30572&l=en
THIS RESOURCE IS NO LONGER IN SERVCE, documented September 2, 2016.
Proper citation: KI Biobank - NOAK (RRID:SCR_006008) Copy
Collects and stores genetic (DNA) samples along with associated healthcare information from patients of Northwestern-affiliated hospitals and clinics. This resource is available to scientists to conduct groundbreaking genetic research. The information and blood samples provided will be used by researchers to examine the role genes play in the development and treatment of common diseases. The NUgene Project seeks to increase the understanding of genetic mechanisms underlying common diseases, assist in the development of DNA-based technology for diagnosis and treatment of disease, and aid physicians and other healthcare providers in the application of genetics to the practice of medicine. NUgene participants are recruited throughout the Northwestern-affiliated healthcare community in order to create an ethnically and medically diverse population for research. Participants must be 18 years of age or older and receive their medical care from a Northwestern-affiliated provider, regardless of health status. Consenting individuals complete all aspects of enrollment in a single meeting with a research coordinator. The enrollment process includes the donation of a single sample of blood and the completion of a self-administered questionnaire. Participants also sign a consent form during this encounter. The NUgene Project is an interdisciplinary project that relies on the expertise of individuals working in a variety of fields, including science, medicine, clinical research, statistics, epidemiology, and computational biology. NUgene''s multidisciplinary approach has spurred collaborations within Northwestern-affiliated institutions and with other outside institutions. This collaboration of ideas is the future of genetics and genomic research., THIS RESOURCE IS NO LONGER IN SERVICE. Documented on September 16,2025.
Proper citation: NUgene Project (RRID:SCR_007426) Copy
http://www.niaid.nih.gov/about/organization/dait/pages/csgadp.aspx
Collaborative network of investigators with a focus on prevention of autoimmune disease, defined as halting the development of autoimmune disease prior to clinical onset by means other than global immunosuppression, and an emphasis on Type 1 diabetes. Its mission is to engage in scientific discovery that significantly advances knowledge for the prevention and regulation of autoimmune disease. The specific goals enunciated in pursuit of this mission are: * To create improved models of disease pathogenesis and therapy to better understand immune mechanisms that will provide opportunities for prevention strategies * To use these models as validation platforms with which to test new tools applicable to human studies * To encourage core expertise and collaborative projects designed for rapid translation from animal to human studies, emphasizing the development of surrogate markers for disease progression and/or regulation which can be utilized in the context of clinical trials
Proper citation: Cooperative Study Group for Autoimmune Disease Prevention (RRID:SCR_006803) Copy
Database and biorepository from a multi-site, multi-disciplinary study characterizing the familial transmission of alcoholism and related phenotypes and identifying susceptibility genes using genetic linkage. Investigators have assembled a collection of over 300 extended families densely affected by alcoholism (more than 3000 individuals), including clinical, neuropsychological, electrophysiological, biochemical, and genetic data, and established a repository of immortalized cell lines from these individuals, to serve as a permanent source of DNA for genetic studies. NIAAA has funded the Collaborative Studies on Genetics of Alcoholism (COGA) since 1989, with the goal of identifying the specific genes underlying this vulnerability. Data and biomaterials are available to qualified investigators in the broader scientific community. Recipients of data and biomaterials will be responsible for defraying the cost of their distribution. Pedigrees densely affected with alcoholism (DSM-III-R) have been ascertained at six sites (SUNY Downstate Health Sciences Center, University of Connecticut, Indiana University, Washington University, University of Iowa, and The University of California at San Diego). Diagnoses of alcohol dependence according to several diagnostic systems (e.g., DSM-III-R, Feighner, ICD-10) are made based on examination of medical records and direct assessment using the Semi-Structured Assessment for Genetics of Alcoholism (SSAGA). Nuclear and extended pedigrees containing at least two alcohol-dependent first-degree relatives in addition to an alcohol dependent proband (with all affected individuals meeting both DSM-IIIR and Feighner criteria) have been ascertained. Clinical data comprises anonymous data on family structure, age, sex, vital status, psychopathology, diagnosis, other clinically relevant information, are stored, maintained, and distributed by Washington University. Research data, consist of data on blood biochemistry and psychological test performance, which are stored, maintained, and distributed by Washington University, and brain electrophysiological data, which are stored, maintained, and distributed by SUNY. Genetic analysis data, consisting of marker genotypes, along with results of previous genetic analyses of COGA data, are stored, maintained, and distributed by Washington University. Biomaterials, consisting of lymphoblastoid cell lines and DNA from participating subjects are stored, maintained, and distributed by Rutgers University. Researchers may gain access to clinical data, research data, genetic analysis data, and biomaterials, subject to NIAAA approval, by completing an application details available from the website. After access certification, the principal investigator will be given access to electronic data files and other documentation.
Proper citation: Collaborative Studies on Genetics of Alcoholism (RRID:SCR_006841) Copy
An observational longitudinal clinical study partnership to identify and validate biomarkers of Parkinson disease (PD) progression and provide easy and open web-based access to the comprehensive set of correlated clinical data and biospecimens, information, and biosamples acquired from PD and age and gender matched healthy control subjects to the research community. The data and specimens have been collected in a standardized manner under strict protocols and includes clinical (demographic, motor and non-motor, cognitive and neurobehavioral), imaging (raw and processed MRI, SPECT and DAT), and blood chemistry and hematology subject assessments and biospecimen inventories (serum, plasma, whole blood, CSF, DNA, RNA and urine). All data are de-identified to protect patient privacy. PPMI will be carried out over five years at 21 clinical sites in the United States and Europe and requires the participation of 400 Parkinson's patients and 200 control participants. The PPMI database provides researchers with access to correlated clinical and imaging data, along with annotated biospecimens, all available within an open access system that encourages data sharing (http://www.ppmi-info.org/access-data-specimens/). The website hosts an Ongoing Analysis section to keep the scientific community apprised of analyses being completed, in hopes of stimulating collaborations between researchers who are using PPMI data and specimens.
Proper citation: Parkinson's Progression Markers Initiative (RRID:SCR_006431) Copy
Program provides advanced graduate training to veterinarians who wish to pursue careers in comparative medicine. Trainees may combine one year of residency training in clinical, administrative and diagnostic laboratory animal medicine with two or more years of research training. Alternatively, trainees with experience in laboratory animal medicine, comparative pathology or related disciplines may begin research training at the time of admission. Training is designed to prepare individuals for a variety of careers including comparative medicine research, clinical and administrative laboratory animal medicine and comparative and diagnostic laboratory animal pathology. Students may either pursue an MS or PhD. Research opportunities are available in several areas including infectious disease, pathology, molecular biology, mouse biology and cardiovascular physiology. Resources available include the University of Missouri Office of Animal Resources (OAR) and Research Animal Diagnostic Laboratory (RADIL) and Mutant Mouse and Rat Resource and Research Centers. The University of Missouri Comparative Medicine Program (CMP) is post Doctor of Veterinary Medicine training that combines graduate residency training, course work and research. Trainees with relevant experience in laboratory animal medicine or comparative pathology may pursue research training without residency training. In the residency year of training, two rotations are performed: diagnostic laboratory animal pathology in the Research Animal Diagnostic Laboratory (RADIL); clinical medicine and animal resource management in the Office of Animal Resources (OAR). The remaining two to four years focus on research training under an established investigator. After three years, trainees successfully fulfilling program requirements receive a certificate of residency training. MS students complete their program while PhD students continue to pursue research training. Sponsors: CMP is supported by the University of Missouri comparative, medicine, veterinarian, residency, training, clinical, administrative, diagnostic, laboratory, animal, pathology, cardiovascular, molecular, biology, mouse, physiology
Proper citation: University of Missouri Comparative Medicine Program (RRID:SCR_008298) Copy
A center that works with the Oregon Alzheimer's Disease Center's Data Core, and collects and stores tissue samples, family history and genotype data of various populations. These include samples and data from subjects from the following sources: OADC clinical studies, the Oregon Brain Aging Study, the Community Brain Donor Program, the Preventing Cognitive Decline with Alternative Therapies program (informally called the Dementia Prevention Study or DPS), the African American Dementia and Aging Project, and the Klamath Exceptional Aging Project. The collected data samples include genomic DNA, lymphoblast cell lines, genome-wide and candidate region SNP marker data, APOE, AD candidate gene markers.
Proper citation: Layton Center Biomarkers and Genetics (RRID:SCR_008824) Copy
http://www.framinghamheartstudy.org/
A longitudinal, epidemiologic study to identify the common risk factors or characteristics that contribute to cardiovascular disease by following its development over a long period of time in a large group of participants who had not yet developed overt symptoms or suffered a heart attack or stroke. Since that time the FHS has studied three generations of participants resulting in biological specimens and data from nearly 15,000 participants. Since 1994, two groups from minority populations, including related individuals have been added to the FHS. FHS welcomes proposals from outside investigators for data and biospecimens. The researchers recruited 5,209 men and women between the ages of 30 and 62 from the town of Framingham, Massachusetts, and began the first round of extensive physical examinations and lifestyle interviews that they would later analyze for common patterns related to CVD development. Since 1948, the subjects have continued to return to the study every two years for a detailed medical history, physical examination, and laboratory tests, and in 1971, the Study enrolled a second generation - 5,124 of the original participants'''' adult children and their spouses - to participate in similar examinations. In 1994, the need to establish a new study reflecting a more diverse community of Framingham was recognized, and the first Omni cohort of the Framingham Heart Study was enrolled. In April 2002 the Study entered a new phase, the enrollment of a third generation of participants, the grandchildren of the Original Cohort. In 2003, a second group of Omni participants was enrolled. Over the years, careful monitoring of the Framingham Study population has led to the identification of major CVD risk factors, as well as valuable information on the effects of these factors such as blood pressure, blood triglyceride and cholesterol levels, age, gender, and psychosocial issues. Risk factors for other physiological conditions such as dementia have been and continue to be investigated. In addition, the relationships between physical traits and genetic patterns are being studied. FHS clinical and research data is stored in the dbGaP and NHLBI Repository repositories and may be accessed by application. Please check the following repositories before applying for data through FHS. Investigators seeking data that is not available through dbGaP or BioLINCC or seeking biological specimens may submit a proposal through the FHS web-based research application. The FHS data repository may be accessed through this FHS website, under the For Researchers link, then Description of Data, in order to determine if and how the desired data is stored. Proposals may involve the use of existing data, the collection of new data, either directly from participants or from previously collected samples, images, or other materials (e.g., medical records). The FHS Repository also has biological specimens available for genetic and non-genetic research proposals. Specimens include urine, blood and blood products, as well as DNA.
Proper citation: Framingham Heart Study (RRID:SCR_008963) Copy
http://psychiatry.stanford.edu/alzheimer/files/gpkt.pdf
50 question test devised by Javaid Sheikh, M.D., and Jerome A. Yesavage, M.D., of the Department of Psychiatry and Behavioral Sciences at Stanford University School of Medicine, to test one''s knowledge of certain aspects of geriatric psychiatry, including five broad areas: psychodynamics and psychotherapy, cognitive assessment, psychosocial and developmental aspects, psychopharmacology, and clinical syndromes.
Proper citation: Geriatric Psychiatry Knowledge Test (RRID:SCR_009029) Copy
https://www.qmul.ac.uk/research/facilities-and-resources/
A collection of laboratory and research facilities in London that cover several domains including but not limited to: biological and chemical sciences, cancer research, condensed matter and material physics, computational research and clinical trials.
Proper citation: Queen Mary University of London Labs and Facilities (RRID:SCR_000234) Copy
https://www.med.uvm.edu/neurocobre/home
THIS RESOURCE IS NO LONGER IN SERVICE. Documented on August 30,2023. A university-based lab facility for research in biomedicine and neuroscience. The center was created to expand neuroscience research and training, develop shared core facilities and provide funding for research by neuroscience faculty. There is an emphasis on interdisciplinary neuroscience research and dialogue between basic and clinical neuroscientists.
Proper citation: University of Vermont Labs and Facilities; Center of Biomedical Research Excellence (COBRE) in Neuroscience (RRID:SCR_000176) Copy
A blog by a Romanian clinical psychologist and psychotherapist Lucia Grosaru. Major categories include: General, lifestyle, news, pensees, psychologists, psychotherapy, self-help and video. Lucia Grosaru is the President and a Founding Member of the Romanian Institute Sic Cogito, Founding Member for The Romanian Center of Psychology and a Founding Editor of The Romanian Journal of Psychology, Psychotherapy and Neuroscience. Lucia is an integrative psychotherapist, clinical psychologist and a Certified Rorschach Inkblot Test Specialist (Method: Scuola Romana Rorschach, Italy). She has graduated the Psychology and Educational Science Faculty at the University of Bucharest in 2008 and the Cognitive Psychodiagnosis and Counseling Master's Programme in 2010.
Proper citation: Psychology Corner (RRID:SCR_000630) Copy
http://archives.niddk.nih.gov/patient/crisp/rp-crisp.aspx
A five-year prospective cohort study following 240 patients who have autosomal-dominant polycystic kidney disease (PKD) to determine whether changes in anatomic characteristics of their kidneys as measured by magnetic resonance imaging will be useful in providing surrogate measures for disease progression. CRISP's overall goal is to develop methods that would facilitate shortening the observation period necessary to determine efficacy of treatment interventions in PKD patients. Specific goals of this study are to: * Quantify cyst growth and ascertain severity of renal parenchymal involvement by sequential measurement of total kidney volume and the ratio of intact parenchyma to renal parenchyma occupied by cysts over time * Establish useful clinical correlations of imaging data with other markers of disease progression * Identify and test other potential markers or indices of disease progression, for example, assessment of loss of heterozygosity of renal cells shed in the urine, or other markers, in cohorts of patients with PKD * Gain information about the cost-effectiveness, patient acceptability, and advantages and disadvantages of different imaging techniques used serially in patients with PKD. Some experience has been gained in establishing that repeat imaging of the same PKD patient, using these techniques, yields reproducible estimates of kidney size and the proportion of renal parenchyma occupied by cysts. MRI may also have the advantage of permitting simultaneous estimation of GFR. Ultrasound has the advantage of being more cost-effective and perhaps more acceptable to patients for repetitive studies, but the measurements may be less accurate and reproducible. Nonetheless, there is very limited experience in applying these techniques to follow progression of the renal disease. Development of improved, reproducible imaging methods that assess cyst growth and provide markers of disease progression could markedly improve the feasibility of clinical trials. Participating clinical centers are Emory University, the Mayo Clinic, University of Kansas, and the University of Alabama at Birmingham. The data coordinating and imaging analysis center is at Washington University. (PI has since moved to University of Pittsburgh) The study found that kidney enlargement resulting from the expansion of cysts is continuous, quantifiable, and associated with the decline of renal function. Cystic expansion occurs at a consistent rate per individual, although it is heterogeneous in the population, and that larger kidneys are associated with more rapid decrease in renal function. These anatomic characteristics of patient kidneys may provide useful surrogate measures for disease progression, and hence enhance the development of targeted therapies for autosomal dominant PKD. CRISP III is a five-year prospective cohort study to follow ~170 remaining autosomal dominant polycystic kidney disease (ADPKD) patients who were part of the original CRISP cohort study. CRISP III will verify and extend the preliminary observations of CRISP to determine the extent to which quantitative (kidney volume and blood flow, and hepatic and kidney cyst volume) or qualitative (cyst distribution and character) structural parameters predict renal insufficiency and develop and test new metrics to quantify and monitor disease progression. Urine metabolites and the genome will be correlated with the progression of disease to look for new, predictive disease biomarkers. This information from CRISP III will help determine if the kidney enlargement, blood flow, cyst distribution, or urine metabolites can function as an informative surrogate measure for disease progression.
Proper citation: Consortium for Radiologic Imaging Studies of Polycystic Kidney Disease (RRID:SCR_000690) Copy
https://www.lookaheadtrial.org
16-center, randomized clinical trial investigating the long-term health consequences of an intensive lifestyle intervention program designed to achieve and maintain weight loss by decreased caloric intake and increased physical activity in overweight volunteers with type 2 diabetes. The Look AHEAD cohort comprises approximately 5,000 overweight or obese participants with type 2 diabetes, aged 45-76. Participants were randomized to one of two interventions: an intensive lifestyle intervention designed to produce and sustain weight loss over the long term or a diabetes support and education arm. Participants will be followed for a total of 11 to 13.5 years from randomization. The primary hypothesis is that the incidence rate of the first post-randomization occurrence of a composite outcome, which includes * cardiovascular death (including fatal myocardial infarction and stroke), * non-fatal myocardial infarction, * hospitalized angina, and * non-fatal stroke, over a planned follow-up period of up to 13.5 years will be reduced among participants assigned to the Lifestyle Intervention compared to those assigned to the control condition, Diabetes Support and Education. Look AHEAD will also test for reductions in the incidence of three secondary composite outcomes and examine the effect of the intervention on cardiovascular disease risk factors, diabetes control and complications, general health, and quality of life, and psychological outcomes. The cost and cost-effectiveness of the Lifestyle Intervention relative to Diabetes Support and Education will be assessed. The Look AHEAD intensive lifestyle intervention ended September, 2012. Participants continue to be followed to determine the long-term effects of the intervention on health outcomes.
Proper citation: Look AHEAD (RRID:SCR_001490) Copy
http://cph.georgetown.edu/taiwan.html
Data sets of information regarding the health and well-being of older persons in Taiwan (from 2000 and 2006), in particular the relationship between life challenges and mental and physical health, the impact of social environment on the health and well-being of the elderly, and biological markers of health and stress. The study collected self-reports of physical, psychological, and social well-being, plus extensive clinical data based on medical examinations and laboratory analyses. Examination of health outcomes included chronic illnesses, functional status, psychological well-being, and cognitive function. Questions regarding life challenges focused on perceived stress, economic difficulties, security and safety, and the consequences of a major earthquake. Biological markers were used to identify cardiovascular risk factors, metabolic process measures, immune-system activity, the hypothalamic-pituitary adrenal axis, and sympathetic nervous system activity. The study design consists of face-to-face interviews with participants drawn from a random sub-sample of participants from 27 PSUs from the 1999 Survey of Health and Living Status of the Middle Aged and Elderly in Taiwan. Hospital visits and blood and urine specimens also were collected. A second wave of SEBAS was conducted in 2006 using a similar protocol to SEBAS 2000, but with the addition of performance assessments conducted by the interviewers at the end of the home interview. * Dates of Study: -2000, 2006 * Study Features: Longitudinal, International, Anthropometric Measures * Sample Size: 27 PSUs
Proper citation: Social Environment and Biomarkers of Aging Study in Taiwan (RRID:SCR_003704) Copy
Data sets resulting from glaucoma research including visual fields, various imaging modalities and other data from both glaucomatous and normal subjects. The Longitudinal Glaucomatous Visual Fields data set contains IOP (Intraocular pressure) measurements and 24-2 Full Threshold visual fields obtained with a Humphrey Field Analyzer (Zeiss). Data of both eyes of 139 patients over a mean period of over 9 years is included, with on average more than 17 fields per eye. Local threshold and total deviation values are included.
Proper citation: Open Rotterdam Glaucoma Imaging Data Sets (RRID:SCR_003540) Copy
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