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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   

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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   

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http://www.scid4.org/

A diagnostic exam used to determine DSM-IV Axis I disorders (SCID-I) (major mental disorders) and Axis II disorders (SCID-II) (personality disorders). An Axis I SCID assessment with a psychiatric patient usually takes between 1 and 2 hours, depending on the complexity of the subject's psychiatric history and their ability to clearly describe episodes of current and past symptoms. A SCID with a non-psychiatric patient takes 1/2 hour to 1-1/2 hours. A SCID-II personality assessment takes about 1/2 to 1 hour. The instrument was designed to be administered by a clinician or trained mental health professional. (Adapter from Wikipedia)

Proper citation: Structured Clinical Interview for DSM-IV (RRID:SCR_003682) Copy   

•   Source: SciCrunch Registry

http://ki.se/ki/jsp/polopoly.jsp?d=29328&a=31530&l=en

THIS RESOURCE IS NO LONGER IN SERVICE, documented August 23, 2016. Longitudinal Assessment of Clinical Course and BIOmarkers in severe Chronic AIRway Disease (BIOAIR) is a study within the European Network For Understanding Mechanisms Of Severe Asthma (ENFUMOSA). BIOAIR study involves studies of severe asthma. The 10% of all asthmatics who have the most difficult disease has a 5-year survival in level with severe cancer diseases, as well as account for half of the costs to society of asthma. Mechanisms for the development of severe asthma, however, is unknown. BIOAIR the project characterizes clinical Phenotype and biomarkers in a study involving 12 centers in nine European countries. In a longitudinal study comparing severe asthmatics with mild asthmatics and patients with COPD (Chronic obstructive pulmonary disease). Clinical data and medicine consumption are collected daily in over a year with the help of modern IT technology. Blood tests, urine samples, upphostningsprover and bronkialbiopsier are collected repeatedly and tested for a wide range of possible pathogenetic factors, including genotype.

Proper citation: BIOAIR - BIOmarkers in severe Chronic AIRway Disease (RRID:SCR_006007) Copy   

•   Source: SciCrunch Registry

http://phenotips.cs.toronto.edu/

A software tool providing a Web interface and a database back-end for collecting clinical symptoms and physical findings observed in patients with genetic disorders. The main goals of this software are * To allow for collecting patient data in standard formats, enabling effortless data exchange and automated search in annotated gene and disease databases, and * To provide advanced functionalities and a friendly user interface that help reduce the clinician''''s workload, permitting seamless use of this application within the clinician''''s routine. PhenoTips uses the Human Phenotype Ontology (HPO) to express clinical phenotypes, and provides a friendly interface with error-tolerant, predictive search of phenotypic descriptions. PhenoTips closely mirrors clinician workflows: observations can be recorded directly during the patient encounter, and the interface is compatible with any device that runs a modern Web browser. The clinician can record demographic information, family history, medical history, various standard measurements, phenotypic abnormalities detected in the patient, pertinent indications that were not observed and that can be helpful for differential diagnosis, relevant images depicting manifestations of the patient''''s disorders, and additional notes for each of these categories. The software automatically plots growth curves, selects phenotypes reflecting abnormal measurements, instantly finds OMIM disorders matching the phenotypic description and suggests other symptoms to investigate in order to reach a more accurate diagnosis.

Proper citation: PhenoTips (RRID:SCR_006340) Copy   

•   Source: SciCrunch Registry

https://nda.nih.gov/oai

Centralized, annotated repository for the Osteoarthritis Initiative (OAI) study, designed to accelerate research by organizing and linking extensive clinical, imaging (MRI/X-ray), and biomarker data. It aims to help researchers analyze knee osteoarthritis prevention, treatment, and progression.

Proper citation: OAI Knowledge base (RRID:SCR_028107) Copy   

•   Source: SciCrunch Registry

http://www.tmf-ev.de/EnglishSite/Home.aspx

As an umbrella organization for medical research networks, the TMF is responsible for improving the organization and infrastructure of medical research in networked structures. It supports researchers at the various locations in jointly identifying and solving problems of an organizational, legal and technical nature that are often not associated with the particular clinical problem or research focus. The network not only focuses on legal and ethical frameworks for networked medical research but also on the development of IT infrastructure, quality management activities for science-initiated trials and questions on the intermeshing of research and patient care. Under the umbrella organization of the TMF, expert opinions, studies, concepts, requirements specifications, services and tools are created. The products of the cooperation within the TMF are available to the research community. The aims of joint work in the TMF are: * Improvement of medical research in terms of quality, organization and cooperation * Solution of questions spanning networked medical research, e.g. on the collection, processing and exchange of research data * Clarification of the legal and ethical foundations for performing medical research * Issues of quality assurance and quality management * Development and extension of efficient IT infrastructures and their implementation in cross-institutional networked structures * Realization of cross-location solutions * Contributions to sustainable and efficient health research by means of the improved transfer of research findings to patient care

Proper citation: TMF (RRID:SCR_004993) Copy   

•   Source: SciCrunch Registry

http://cvr.yorku.ca/home/

The Centre for Vision Research focuses on interdisciplinary research into human and machine vision and visual processes, into vision's interactions with other senses and with motor and cognitive processes, and in applications such as visually-guided robotics or clinical diagnosis and treatment. The Centre for Vision Research includes the following major research themes: - Human Visual Performance - Visual Human-Computer Interaction, Graphics and Virtual Reality - Visual Psychophysics - Eye Movements and Hand-Eye Coordination - Computational Modeling and Computer Vision - Electrophysiology - Clinical and Developmental Studies - Brain Imaging

Proper citation: Centre for Vision Research (RRID:SCR_002879) Copy   

•   Source: SciCrunch Registry

http://www.acmg.net

An organization composed of biochemical, clinical, cytogenetic, medical and molecular geneticists, genetic counselors and other health care professionals committed to the practice of medical genetics to Improve Health Through Medical Genetics. The American College of Medical Genetics and Genomics will: * Define and promote excellence in the practice of medical genetics and genomics in the integration of translational research into practice; * Promote and provide medical genetics and genomics education; * Increase access to medical genetics and genomics services and integrate them into patient care; * Advocate for and represent providers of medical genetics and genomics services and their patients; and * Maintain structure and integrity of ACMG and its value to members and the public.

Proper citation: American College of Medical Genetics and Genomics (RRID:SCR_005769) Copy   

•   Source: SciCrunch Registry

http://www.orpha.net/

European website providing information about orphan drugs and rare diseases. It contains content both for physicians and for patients. Reference portal for rare diseases and orphan drugs to help improve diagnosis, care and treatment of patients with rare diseases.

Proper citation: Orphanet (RRID:SCR_006628) Copy   

•   Source: SciCrunch Registry

http://www.bnf.org/bnf/

The BNF aims to provide prescribers, pharmacists and other healthcare professionals with sound up-to-date information about the use of medicines. The BNF provides ready access to key information on the selection, prescribing, dispensing and administration of medicines. Medicines that are generally prescribed in the UK are covered and those considered less suitable for prescribing are clearly identified.

Proper citation: British National Formulary (RRID:SCR_008176) Copy   

•   Source: SciCrunch Registry

http://neurogenetics.nia.nih.gov

A suite of web-based open source software programs for clinical and genetic study. The aims of this software development in the Laboratory of Neurogenetics, NIA, NIH are * Build retrievable clinical data repository * Set up genetic data bank * Eliminate redundant data entries * Alleviate experimental error due to sample mix-up and genotyping error. * Facilitate clinical and genetic data integration. * Automate data analysis pipelines * Facilitate data mining for genetic as well as environmental factors associated with a disease * Provide an uniformed data acquisition framework, regardless the type of a given disease * Accommodate the heterogeneity of different studies * Manage data flow, storage and access * Ensure patient privacy and data confidentiality/security. The GERON suite consists of several self contained and yet extensible modules. Currently implemented modules are GERON Clinical, Genotyping, and Tracking. More modules are planned to be added into the suite, in order to keep up with the dynamics of the research field. Each module can be used separately or together with others into a seamless pipeline. With each module special attention has been given in order to remain free and open to the academic/government user., THIS RESOURCE IS NO LONGER IN SERVICE. Documented on September 16,2025.

Proper citation: GERON (RRID:SCR_008531) Copy   

•   Source: SciCrunch Registry

https://ctsi.ucsf.edu

An institute which provides infrastructure, services, and training to support clinical and translational research. It develops broad coalitions and partnerships at the local and national levels to enable a transformation of the research environment.

Proper citation: UCSF Clinical and Translational Science Institute (RRID:SCR_014711) Copy   

•   Source: SciCrunch Registry

http://www.biomedbridges.eu/

Consortium of 12 Biomedical sciences research infrastructure (BMS RI) partners to develop a shared e-infrastructure to allow interoperability between data and services in the biological, medical, translational and clinical domains (providing a complex knowledge environment comprising standards, ontologies, data and services) and thus strengthen biomedical resources in Europe. The BMS RIs are on the roadmap of the European Strategy Forum on Research Infrastructures (ESFRI). Connecting several European research infrastructures brings a diversity of ethical, legal and security concerns including data security requirements for participating e-Infrastructures that are storing or processing patient-related data (or biosamples): EATRIS, ECRIN, BBMRI, EuroBioImaging and EMBL-EBI. In addition, INSTRUCT is interested in secure sample transport and in intellectual property rights; Infrafrontier stores high-throughput data from mice. BBMRI with its focus on the availability of biomaterials is currently emphasizing aspects like k-anonymity and metadata management for its data. Sharing of imaging data by Euro-BioImaging poses challenges with respect to anonymisation and intellectual property. Therefore, an ethical, regulatory and security framework for international data sharing that covers these diverse areas and different types of data (e.g. clinical trials data, mouse data, and human genotype and DNA sequence data) is of crucial importance. The outcomes will lead to real and sustained improvement in the services the biomedical sciences research infrastructures offer to the research community. Data curation and sample description will be improved by the adoption of best practices and agreed standards. Many improvements will emerge from new interactions between RIs created by data linkage and networking. Ensuring access to relevant information for all life science researchers across all BMS RIs will enable scientists to conduct and share cutting-edge research.

Proper citation: BioMedBridges (RRID:SCR_006179) Copy   

•   Source: SciCrunch Registry

http://www.ddduk.org/

The Deciphering Developmental Disorders (DDD) study aims to find out if using new genetic technologies can help doctors understand why patients get developmental disorders. To do this we have brought together doctors in the 23 NHS Regional Genetics Services throughout the UK and scientists at the Wellcome Trust Sanger Institute, a charitably funded research institute which played a world-leading role in sequencing (reading) the human genome. The DDD study involves experts in clinical, molecular and statistical genetics, as well as ethics and social science. It has a Scientific Advisory Board consisting of scientists, doctors, a lawyer and patient representative, and has received National ethical approval in the UK. Over the next few years, we are aiming to collect DNA and clinical information from 12,000 undiagnosed children in the UK with developmental disorders and their parents. The results of the DDD study will provide a unique, online catalogue of genetic changes linked to clinical features that will enable clinicians to diagnose developmental disorders. Furthermore, the study will enable the design of more efficient and cheaper diagnostic assays for relevant genetic testing to be offered to all such patients in the UK and so transform clinical practice for children with developmental disorders. Over time, the work will also improve understanding of how genetic changes cause developmental disorders and why the severity of the disease varies in individuals. The Sanger Institute will contribute to the DDD study by performing genetic analysis of DNA samples from patients with developmental disorders, and their parents, recruited into the study through the Regional Genetics Services. Using microarray technology and the latest DNA sequencing methods, research teams will probe genetic information to identify mutations (DNA errors or rearrangements) and establish if these mutations play a role in the developmental disorders observed in patients. The DDD initiative grew out of the groundbreaking DECIPHER database, a global partnership of clinical genetics centres set up in 2004, which allows researchers and clinicians to share clinical and genomic data from patients worldwide. The DDD study aims to transform the power of DECIPHER as a diagnostic tool for use by clinicians. As well as improving patient care, the DDD team will empower researchers in the field by making the data generated securely available to other research teams around the world. By assembling a solid resource of high-quality, high-resolution and consistent genomic data, the leaders of the DDD study hope to extend the reach of DECIPHER across a broader spectrum of disorders than is currently possible.

Proper citation: Deciphering Developmental Disorders (RRID:SCR_006171) Copy   

•   Source: SciCrunch Registry

http://www.birncommunity.org/tools-catalog/human-imaging-database-hid/

THIS RESOURCE IS NO LONGER IN SERVICE. Documented October 5, 2017.

Database management system developed to handle the increasingly large and diverse datasets collected as part of the MBIRN and FBIRN collaboratories and throughout clinical imaging communities at large. The HID can be extended to contain relevant information concerning experimental subjects, assessments of subjects, the experimental data collected, the experimental protocols, and other metadata normally included with experiments.

Proper citation: Human Imaging Database (RRID:SCR_006126) Copy   

•   Source: SciCrunch Registry

http://www.chictr.org/en/

National clinical trial registry by Ministry of Health of China to join World Health Organization International Clinical Trial Registration Platform (WHO ICTRP Primary Registry), and the approved Primary Registry of WHO ICTRP. It registers both Chinese and global clinical trials, receives data from Partner Registers certified by the WHO ICTRP, and submits data to the WHO ICTRP Central Repository for global search. Moreover, based upon the talent and technical platform, consisting of Chinese Evidence-based Medicine Centre of Ministry of Health of China, Virtual Research Centre of Evidence-Based Medicine of Ministry of Education of China, Chinese Cochrane Centre, UK Cochrane Centre and International Clinical Epidemiology Network Resource and Training Centre in West China Hospital, Sichuan University (INCLEN CERTC), ChiCTR is responsible for providing consultations on trial design, central randomization service, guidance on the writing of clinical trial reports and relevant training. WHO takes the lead in establishing the global clinical trial registration system, which is agreed upon by governments from all over the world. There are both ethical and scientific reasons for clinical trial registration. Trial participants expect that their contributions to biomedical knowledge will be used to improve health care for everyone. Open access to information about ongoing and completed trials meets the ethical duty to trial participants, and promotes greater trust and public confidence in clinical research. Furthermore, trial registration ensures that the results of all trials can be tracked down and should help to reduce unnecessary duplication of research through greater awareness of existing trials and results. The mission of ChiCTR is to Unite clinicians, clinical epidemiologists, biostatisticians, epidemiologists and health care managers both at home and abroad, to manage clinical trials in a strict and scientific manner, and to promote their quality in China, so as to provide reliable evidences from clinical trials for health care workers, consumers and medical policy decision makers, and also to use medical resources more effectively to provide better service for Chinese people and all human beings. Any trial performed in human beings is considered as a clinical trial, and should be registered before its implementation. All the registered clinical trials will be granted a unique registration number by WHO ICTRP.

Proper citation: ChiCTR - Chinese Clinical Trial Registry (RRID:SCR_006037) Copy   

•   Source: SciCrunch Registry