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http://www.alz.washington.edu/

A clinical research, neuropathological research and collaborative research database that uses data collected from 29 NIA-funded Alzheimer's Disease Centers (ADCs). The database consists of several datasets, and searches may be done on the entire database or on individual datasets. Any researcher, whether affiliated with an ADC or not, may request a data file for analysis or aggregate data tables. Requested aggregate data tables are produced and returned as soon as the queue allows (usually within 1-3 days depending on the complexity).

Proper citation: National Alzheimer's Coordinating Center (RRID:SCR_007327) Copy   

•   Source: SciCrunch Registry

http://www.cristudy.org/Chronic-Kidney-Disease/Chronic-Renal-Insufficiency-Cohort-Study/

A prospective observational national cohort study poised to make fundamental insights into the epidemiology, management, and outcomes of chronic kidney disease (CKD) in adults with intended long-term follow up. The major goals of the CRIC Study are to answer two important questions: * Why does kidney disease get worse in some people, but not in others? * Why do persons with kidney disease commonly experience heart disease and stroke? The CRIC Scientific and Data Coordinating Center at Penn receives data and provides ongoing support for a number of Ancillary Studies approved by the CRIC Cohort utilizing both data collected about CRIC study participants as well as their biological samples. The CRIC Study has enrolled over 3900 men and women with CKD from 13 recruitment sites throughout the country. Following this group of individuals over the past 10 years has contributed to the knowledge of kidney disease, its treatment, and preventing its complications. The NIDDKwill be extending the study for an additional 5 years, through 2018. An extensive set of study data is collected from CRIC Study participants. With varying frequency, data are collected in the domains of medical history, physical measures, psychometrics and behaviors, biomarkers, genomics/metabolomics, as well as renal, cardiovascular and other outcomes. Measurements include creatinine clearance and iothalamate measured glomerular filtration rate. Cardiovascular measures include blood pressure, ECG, ABI, ECHO, and EBCT. Clinical CV outcomes include MI, ischemic heart disease-related death, acute coronary syndromes, congestive heart failure, cerebrovascular disease, peripheral vascular disease, and composite outcomes. The CRIC Study has delivered in excess of 150,000 bio-samples and a dataset characterizing all 3939 CRIC participants at the time of study entry to the NIDDKnational repository. The CRIC Study will also be delivering a dataset to NCBI''''s Database for Genotypes and Phenotypes.

Proper citation: Chronic Renal Insufficiency Cohort Study (RRID:SCR_009016) Copy   

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http://www.pedianet.it/en/

Independent network and system used to collect epidemiological information for clinical research from family paediatricians in Italy. It is based on the transmission of specific data from computerised clinical files. Such data is collected anonymously by a central server in Padua, where it is validated and elaborated.

Proper citation: Pedianet (RRID:SCR_004107) Copy   

•   Source: SciCrunch Registry

http://www2.bsc.gwu.edu/bsc/oneproj.php?pkey=28

THIS RESOURCE IS NO LONGER IN SERVICE. Documented on July 31,2025. Collect, store, and distribute genetic samples from cases and controls of type 1 diabetes and diabetic nephropathy for investigator-driven research into the genetic basis of diabetic nephropathy. As the risk of kidney complications in type 1 diabetes appears to have a considerable genetic component, this study assembled a large data resource for researchers attempting to identify causative genetic variants. The types of data collected allowed traditional case-control testing, a rapid and often powerful approach, and family-based analysis, a robust approach that is not influenced by population substructure.

Proper citation: Genetics of Kidneys in Diabetes (RRID:SCR_000133) Copy   

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http://www.biobank.unisi.it/Elencorett.asp

Data and biospecimen from Rett Syndrome patients shared with the scientific community with the ability to visualize the list of available samples and select those with specific clinical and molecular features. It also contains information on biospecimen samples from x-linked retardation, microdeletion, duplication syndromes, autosomal MR, and retinoblastoma. The bank is active since 1998 and it is located in the Medical Genetics Unit, at the University Hospital of Siena. The bank is divided in three distinct sections: # Rett Syndrome. This section contains samples from patients affected by Rett syndrome, a neurodegenerative disease affecting almost exclusively girls with an estimated frequency of 1:10000-15000 live born. By accessing the section users can see a list of all patients available with their phenotype, the specific MECP2 or CDKL5 mutation if known and the kind of biological samples available for each patient. The availability of this large panel of patients is potentially important for the clarification of the molecular bases of Rett syndrome. In fact, a 20-30 of Rett cases do not have MECP2 or CDKL5 mutations. These patients might bear intronic/promoter MECP2 or CDKL5 mutations or they might have alterations in one or more genes different from MECP2 or CDKL5, as suggested by the identification of various chromosomal rearrangements. To confirm a causative role of these rearrangements, and to identify the relevant gene/s, it is important to collect a great number of patients in which to search for overlapping rearrangements or point mutations in candidate genes. # X-Linked Mental Retardation. This section contains samples collected by the centers belonging to the Italian network on X-linked mental retardation, which includes the laboratory of bank curators (for specific information on the network goals and organization, go to the section page). Mental retardation (MR) is the most frequent cause of serious handicap in humans with an estimated prevalence of 0,3-0,5 for moderate to severe MR (IQ<50) which increases to 1-1,5 when mild MR (IQ 50-70) is included. It is calculated that about 20-25 of mentally retarded males have a mutation in a gene on the X chromosome (X-linked mental retardation). X-linked mental retardation is a genetically heterogeneous condition. This is particularly true for the non-syndromic form (MRX), where MR is the only consistent clinical finding and no distinctive features between patients exist. In this situation the only possibility to group patients from different families is represented by linkage analysis, which needs the availability of large families. However, families linked to the same region demonstrate different causative genes. In these conditions, the number of patients available for analysis is a discriminating factor since a large number of patients need to be tested in order to fully confirm or exclude the involvement of a gene in MRX. # Other. This section of the bank contains biological materials and clinical data of patients with other genetic disorders (different from Rett and X-linked mental retardation). Part of this section is dedicated to Alport syndrome. Services: * Isolation of leukocytes from human peripheral blood samples * Establishment of EBV transformed lymphoblastoid cell lines from human peripheral blood leukocytes. * DNA extraction. * Plasma isolation. * Storage: ** Cryo-preservation of transformed cell lines and primary leukocytes at 135��C ** Storage of DNA at 20 degrees C ** Storage of plasma at 20 degrees C * Distribution of the stored biological samples.

Proper citation: Italian Rett Syndrome database (RRID:SCR_002000) Copy   

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http://www.hipsci.org/

A UK national induced pluripotent stem (iPS) cell resource that will create and characterize more than 1000 human iPSCs from healthy and diseased tissue for use in cellular genetic studies. Between 2013 and 2016 they aim to generate iPS cells from over 500 healthy individuals and 500 individuals with genetic disease. They will then use these cells to discover how genomic variation impacts on cellular phenotype and identify new disease mechanisms. Strong links with NHS investigators will ensure that studies on the disease-associated cell lines will be linked to extensive clinical information. Further key features of the project are an open access model of data sharing; engagement of the wider clinical genetics community in selecting patient samples; and provision of dedicated laboratory space for collaborative cell phenotyping and differentiation.

Proper citation: HipSci (RRID:SCR_003909) Copy   

•   Source: SciCrunch Registry

http://vitiligobiobank.org/

A non-profit collection of biological samples and detailed associated clinical data, designed to facilitate medical research into vitiligo, a devastating skin disease that is much neglected. They collect, store and analyze biological samples throughout the network of collaborators in 11 countries, using standard collection protocols and unified patient record, which are then made available to the scientific community and research organizations investigating pathogeneses, diagnostics, new treatments, and ultimately a cure for vitiligo. The core asset is a large collection of well-organized hair, blood, serum and DNA samples, integrated with comprehensive and anonymized patient records.

Proper citation: Vitiligo Biobank (RRID:SCR_003863) Copy   

•   Source: SciCrunch Registry

http://www.acceleratedcure.org/impact/repository

A repository of biological samples and data from people with multiple sclerosis, selected other demyelinating diseases, and unaffected controls. The repository not only provides much-needed samples and data to researchers studying MS and other diseases, but also aggregates the results from all of these studies so that they can be analyzed collectively, leading to new findings and breakthroughs. The repository collects blood, DNA, and imaging once per year. The repository currently includes samples and data from over 2,700 subjects with Multiple Sclerosis, Neuromyelitis Optica, Acute Disseminated Encephalomyelitis, Transverse Myelitis, Optic Neuritis, and Clinically Isolated Syndromes, as well as controls. Blood samples are provided as aliquots as serum, plasma, DNA, RNA, and lymphocytes and each sample is accompanied by more than 40 pages of clinical and epidemiological data contributed by the subject and the enrolling neurologist.

Proper citation: Accelerated Cure Project MS Repository (RRID:SCR_004208) Copy   

•   Source: SciCrunch Registry

http://www.medunigraz.at/en/biobank

Biobank Graz is a non-profit central Medical University of Graz (MUG) service facility that provides the logistics and infrastructure to optimally support MUG research teams in the collection, processing and storage of biological samples and their associated data. In the course of this, special attention is given to sample and data quality and to the protection of the individual rights of patients. Samples from selected patients at the Graz LKH-University Clinical Centre, who have signed an informed consent declaration, are deposited in Biobank Graz. This means that excess tissue and blood samples are collected and placed in storage. The samples are harvested in the course of routine interventions undertaken by the different departments and institutes of the Graz LKH-University Clinical Centre and approved for use in research projects only after the completion of all necessary laboratory and histopathological analyses. No additional material is removed: in other words, there are no associated drawbacks whatsoever for the patients involved. Biobank Graz operates a quality management system according to ISO 9001:2008 and offers the following services for the processing and storage of biological samples and the handling of data: * Consistently high sample quality through the processing of samples using standardized methods in accordance with written working instructions (SOPs) * Efficient use of resources through the building of shared infrastructure and the development of optimized processes * A high degree of reliability provided by the storage of samples in 24/7 - monitored storage systems. * Processing and storage of all data in accordance with data protection legislation. Biobank Graz comprises both population-based and disease-focused collections of biological materials. It currently contains approx. 3.8 mio samples from approx. 1.2 mio patients representing a nonselected patient group characteristic of central Europe. Because the Institute of Pathology was, until 2003, the exclusive pathology service provider for major parts of the province of Styria, including its capital Graz (population approx. 1.2 mio people), samples from all human diseases, treated by surgery or diagnosed by biopsy, are included in the collection at their natural frequency of occurrence and thus represent cancers and non-cancerous diseases from all organs, and from all age groups. The scientific value of the existing tissue collection is, thus, not only determined by its size and technical homogeneity (all samples have been processed in a single institute under constant conditions for more than 20 years), but also by its population-based character. These features provide ideal opportunities for epidemiological studies and allow the validation of biomarkers for the identification of specific diseases and determination of their response to treatment. Prospectively collected tissues, blood samples and clinical data comprise, on the one hand, randomly selected samples from all diseases and patient groups to provide sufficient numbers of samples for the evaluation of the disease-specificity of any gene or biomarker. On the other hand, Biobank Graz adopts a disease-focused approach for selected diseases (such as breast, colon and liver cancers as well as some metabolic diseases) through the collection of a range of different human biological samples of highest quality and detailed clinical follow-up data. Graz Medical University established the Biobank to provide improved and sustainable access to biological samples and related (clinical) data both for its own academic research and for external research projects of academic and industrial partners. It is a major interest of the university to initiate co-operative research projects. Biological samples and data are available to external institutions performing high-quality research projects which comply with the Biobank''s ethical and legal framework according to the access rules (Contact: COO Karine Sargsyan, MD, PhD).

Proper citation: Biobank Graz (RRID:SCR_004245) Copy   

•   Source: SciCrunch Registry

http://specimencentral.com/

World's open biospecimen research database where biobanks and biomedical researchers meet to exchange human biospecimen needs and supply: whole blood, serum, plasma, solid tissue samples and more. The connection is accelerated so researchers save valuable time and money and tissue banks utilize inventory. The pace of specimen procurement remains unacceptably slow to the biomedical research community. Specimen Central is the foremost global resource to aid biomedical researchers in expediting their search for high quality human biospecimens, tissues, samples and specimens. They facilitate your search for blood, whole blood, buccal swab, DNA, RNA, protein, cell lines, plasma, serum, RBC, white cells, buffy coat, fluid, marrow, urine, stem cells, and solid tissue such as tumor, tumor and biopsy materials spanning all manner of common and rare pathologies and indications including Alzheimer's, basal cell carcinoma, bladder cancer, bone cancer, brain cancer, breast cancer, cerebrospinal fluid, amniotic fluid, colorectal cancer, colon cancer, hodgkins and non-hodgkins lymphoma, kidney/renal cancer, leukemia, liver cancer, lung cancer, melanoma, multiple sclerosis, myeloma neuroblastoma, neurodegenerative diseases, ovarian cancer, pancreatic cancer, prostate cancer, urinary cancer. This includes adult and pediatric indications. Specimen Central users specify a number of variables in their Specimen Requests, including preparation, preservation and handling requirements such as cryo-preserved, FFPE (Formalin-fixed paraffin-embedded), formalin, frozen, refrigerated, OCT, snap frozen, paraffin block, fresh, prospective, autopsy or cadaveric, etc. Many users require clinically annotated date associated with their specimens, as well as documentation of IRB or ethics committee approval and informed consents. For Researchers Most specimen databases require researchers to waste time and effort entering lengthy registrations and search queries that yield poor results, if anything. Specimen Central solves this problem by having tissue banks search for you. From years to months, months to weeks, and weeks to days, Specimen Central seeks to reduce delays and costs in the research & development life cycle by expediting connections between demand and supply. For Biobanks The capital costs of maintaining a biobank infrastructure are substantial and growing. Biobanks use Specimen Central as a marketing tool to augment their business development efforts. By routinely checking Specimen Central's Specimen Requests, biobanks can uncover market demand for their inventories and develop new connections and revenue streams to defray costs. Specimen Central supplements - not displaces - the efforts of your sales representatives, agents, brokers and commercial partners.

Proper citation: SpecimenCentral.com (RRID:SCR_003536) Copy   

•   Source: SciCrunch Registry

http://www.ibcresearch.org/biobank/

The IBC Research Foundation BioBank is a secure, privacy-protected collection of biological specimens from ibc-diagnosed patients (cases, and, unlike the former George Washington University IBC Registry, ibc patients who have died, those who are under legal age, and those living but unable to make decisions for themselves, may be consented to participate in the IBC Research Foundation BioBank by their authorized representative) and from those not diagnosed with ibc (controls), volunteering following a consent decision making process, and signing an Informed Consent. Clinical Data and a comprehensive questionnaire will also be obtained for those diagnosed with ibc. The Inflammatory Breast Cancer Research Foundation (ibcRF) has established a BioBank and Clinical Database. The BioBank contains non-tumor RNA and DNA, tumor RNA and DNA, blocks and slides from diagnostic pathology, and medical records describing clinical and pathologic findings at diagnosis.

Proper citation: Inflammatory Breast Cancer Biobank (RRID:SCR_004556) Copy   

•   Source: SciCrunch Registry

http://www3.marshfieldclinic.org/chg/pages/default.aspx?page=chg_pers_med_res_prj

THIS RESOURCE IS NO LONGER IN SERVICE. Documented on January 9, 2023. A large collection of biological samples and health information collected for the Personalized Medicine Research Project (PMRP) for use in biological research. Genetic information from 20,000 participants forms a database enabling scientists to study which genes cause disease, which genes predict reactions to drugs, and how environment and genes work together to cause disease. The goal of this project is to learn how to apply genetic science to human health. This knowledge will help researchers develop new medications and diagnostic tests, and will enable physicians to prescribe medications that work best for a particular person. Marshfield Clinic Personalized Medicine Research Project (PMRP) resources currently available: DNA, plasma, serum, questionnaire, electronic medical records to construct phenotypes; ability to recontact subjects for additional information (where they have given consent for recontact); stored pathology specimens collected for clinical purposes; 51 clinically relevant polymorphisms; Illumina 660 quad for ~4200 subjects aged 50+.

Proper citation: Marshfield Clinic Biobank (RRID:SCR_004368) Copy   

•   Source: SciCrunch Registry

http://dbmi.mc.vanderbilt.edu/research/dnadatabank.html

THIS RESOURCE IS NO LONGER IN SERVICE. Documented on January 11, 2023. BioVU is a research resource providing a View into biology at the level of DNA and other important macromolecules. BioVU has two major components. The first is a repository of DNA samples (extracted from discarded blood samples) that are coded solely by a Research Unique Identifier (RUI) derived from the Medical Record Number (MRN) using a one-way hash function. This is a computer algorithm that creates a transformation of each MRN such that the resulting RUI (which is in this instance is a 512 byte identifier) is unique, and has the property that it is not possible to infer or compute the MRN that generated it. As of early 2009, over 50,000 DNA samples were in the biobank, with new samples being added at the rate of approximately 700 per week. The second component of the resource is the creation of a database known as the Synthetic Derivative which is a collection of de-identified information extracted from VUMC''s electronic clinical information systems, indexed by the same one-way RUI used to track samples, and with content changed by deletion or permutation of all identifiers contained within each record. The Synthetic Derivative search interface is available to Vanderbilt researchers via the StarBRITE research portal created and maintained by the Vanderbilt Institute for Clinical and Translational Research. This user interface enables investigators meeting protocol approval criteria and other user agreement requirements to receive protocol-specific sets of data derived from DNA samples and from the Synthetic Derivative., THIS RESOURCE IS NO LONGER IN SERVICE. Documented on September 16,2025.

Proper citation: Vanderbilt BioVU (RRID:SCR_004632) Copy   

•   Source: SciCrunch Registry

https://cabig.nci.nih.gov/tools/caTRIP

THIS RESOURCE IS NO LONGER IN SERVICE documented June 4, 2013. Allows users to query across a number of caBIG data services, join on common data elements (CDEs), and view results in a user-friendly interface. With an initial focus on enabling outcomes analysis, caTRIP allows clinicians to query across data from existing patients with similar characteristics to find treatments that were administered with success. In doing so, caTRIP can help inform treatment and improve patient care, as well as enable the searching of available tumor tissue, enable locating patients for clinical trials, and enable investigating the association between multiple predictors and their corresponding outcomes such as survival caTRIP relies on the vast array of open source caBIG applications, including: * Tumor Registry, a clinical system that is used to collect endpoint data * cancer Text Information Extraction System (caTIES), a locator of tissue resources that works via the extraction of clinical information from free text surgical pathology reports. while using controlled terminologies to populate caBIG-compliant data structures * caTissue CORE, a tissue bank repository tool for biospecimen inventory, tracking, and basic annotation * Cancer Annotation Engine (CAE), a system for storing and searching pathology annotations * caIntegrator, a tool for storing, querying, and analyzing translational data, including SNP data Requires Java installation and network connectivity.

Proper citation: caTRIP (RRID:SCR_003409) Copy   

•   Source: SciCrunch Registry

https://ida.loni.usc.edu/login.jsp

Archive used for archiving, searching, sharing, tracking and disseminating neuroimaging and related clinical data. IDA is utilized for dozens of neuroimaging research projects across North America and Europe and accommodates MRI, PET, MRA, DTI and other imaging modalities.

Proper citation: LONI Image and Data Archive (RRID:SCR_007283) Copy   

•   Source: SciCrunch Registry

http://www.ecnp.eu/

A pan-European scientific association to encourage research across the neurosciences and to translate new knowledge on fundamental disease mechanisms into new medicines and clinical applications. As an interdisciplinary forum for the science and treatment of disorders of the brain, they promote the communication and cross- fertilization of high-quality experimental and clinical research across the field of neuroscience. ECNP is a non-profit member-based association, independently governed and self-funded. ECNP is a public-interest-serving entity.

Proper citation: ECNP (RRID:SCR_000501) Copy   

•   Source: SciCrunch Registry

http://www.criver.com/

Commercial organism provider selling mice, rats and other model animals. American corporation specializing in a variety of pre-clinical and clinical laboratory services for the pharmaceutical, medical device and biotechnology industries. It also supplies assorted biomedical products and research and development outsourcing services for use in the pharmaceutical industry. (Wikipedia)

Proper citation: Charles River Laboratories (RRID:SCR_003792) Copy   

•   Source: SciCrunch Registry

http://www.era-edta.org/

An association of European kidney specialists whose objective is advancement of medical science and of clinical work in nephrology, dialysis, renal transplantation, hypertension and related subjects. They aim at providing up-to-date knowledge, exclusively based on scientific data, independent from governments'' policies and from any influence of the industry. It is registered in England and Wales, but its area of activity mainly covers Europe and the Mediterranean area.

Proper citation: ERA-EDTA (RRID:SCR_003982) Copy   

•   Source: SciCrunch Registry

http://www.vasamd.org/

Society devoted to the advancement of the field of dialysis access through research, education and advocacy for patients with end stage kidney disease. They provide vascular access education for physicians, nurses, and other health care professionals and advocate for evidenced-based best clinical practices.

Proper citation: Vascular Access Society of the Americas (RRID:SCR_004058) Copy   

•   Source: SciCrunch Registry

http://clinicaltrials.gov/show/NCT01211678

A consortium evaluating a new biomarker screening test that might help identify patients with rheumatoid arthritis (RA) who are unlikely to benefit from anti-tumor necrosis factor-alpha (TNFalpha) medications. BATTER-UP will enroll around 1,000 patients being treated by one of several marketed anti-TNF RA drugs: Enbrel, Remicade, Humira, Simponi, or Cimzia. Through data analyses and predictive response modeling, the consortium aims to better understand which patients with RA will derive the greatest benefit from TNF inhibitors. The investigators in this observational study will attempt to validate an 8-gene biomarker set based on work by Biogen Idec researchers as likely to predict anti-TNF responsiveness in patients with RA. In preliminary results, the 8-gene biomarker set predicted with 89% accuracy individuals who did not reach European League Against Rheumatism (EULAR) Disease Activity Score (DAS)-28 good response after 14 weeks of treatment. The 8 genes included in the screen are CLTB, MXRA7, CXorf52, COL4A3BP, YIPF6, FAM44A, SFRS2, and PGK1. Biological samples and clinical outcome information will be used to confirm and extend the utility of previously published biomarkers that can predict response to anti-TNF agents. These data may also generate new hypotheses for further testing. The BATTER-UP samples and data will be established as a reference set for investigation of personalized medicine in RA. The study will be a resource of DNA and other biological materials that can be investigated for biomarkers in the future as new technologies arise.

Proper citation: Biomarkers of Anti-TNF Treatment Efficacy in Rheumatoid Arthritis - Unresponsive Populations (RRID:SCR_004019) Copy   

•   Source: SciCrunch Registry