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Found 9 result(s)
HI HOPES aims is to provide free home based support and information without bias to every family with an infant or toddler with hearing loss. Through an early intervention framework of care, support, information and partnership in a culturally sensitive, community based manner to allow we aim to empower the family in their home environment and help the baby with a hearing loss to reach her/his full potential.
The Virtual Research Environment (VRE) is an open-source data management platform that enables medical researchers to store, process and share data in compliance with the European Union (EU) General Data Protection Regulation (GDPR). The VRE addresses the present lack of digital research data infrastructures fulfilling the need for (a) data protection for sensitive data, (b) capability to process complex data such as radiologic imaging, (c) flexibility for creating own processing workflows, (d) access to high performance computing. The platform promotes FAIR data principles and reduces barriers to biomedical research and innovation. The VRE offers a web portal with graphical and command-line interfaces, segregated data zones and organizational measures for lawful data onboarding, isolated computing environments where large teams can collaboratively process sensitive data privately, analytics workbench tools for processing, analyzing, and visualizing large datasets, automated ingestion of hospital data sources, project-specific data warehouses for structured storage and retrieval, graph databases to capture and query ontology-based metadata, provenance tracking, version control, and support for automated data extraction and indexing. The VRE is based on a modular and extendable state-of-the art cloud computing framework, a RESTful API, open developer meetings, hackathons, and comprehensive documentation for users, developers, and administrators. The VRE with its concerted technical and organizational measures can be adopted by other research communities and thus facilitates the development of a co-evolving interoperable platform ecosystem with an active research community.
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The Penn Integrated Neurodegenerative Disease Database (INDD) contains data from individuals with Alzheimer's disease, Parkinson's disease, frontotemporal dementia, and amyotrophic lateral sclerosis, who have been followed in research studies at the University of Pennsylvania. The database has been periodically described in publications (https://pubmed.ncbi.nlm.nih.gov/23978324/), with updates on the website. Researchers can request biosamples as well as clinical and biomarker data. Scientists work collaboratively to analyze the Integrative Neurodegenerative Disease Database (INDD) from the Center for Neurodegenerative Disease Research (CNDR) that tracks ~11,000 patients who attended one of four neurodegenerative disease centers at Penn.
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The New York Brain Bank (NYBB) at Columbia University was established to collect postmortem human brains to meet the needs of neuroscientists investigating specific psychiatric and neurological disorders.
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sciencedata.dk is a research data store provided by DTU, the Danish Technical University, specifically aimed at researchers and scientists at Danish academic institutions. The service is intended for working with and sharing active research data as well as for safekeeping of large datasets. The data can be accessed and manipulated via a web interface, synchronization clients, file transfer clients or the command line. The service is built on and with open-source software from the ground up: FreeBSD, ZFS, Apache, PHP, ownCloud/Nextcloud. DTU is actively engaged in community efforts on developing research-specific functionality for data stores. Our servers are attached directly to the 10-Gigabit backbone of "Forskningsnettet" (the National Research and Education Network of Denmark) - implying that up and download speed from Danish academic institutions is in principle comparable to those of an external USB hard drive. Data store for research data allowing private sharing and sharing via links / persistent URLs.
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Through its Blood4Research Program based in Vancouver, the Centre for Innovation collects blood from committed donors who have been deferred from donating blood for patient use. The collected blood is processed and provided to investigators to facilitate research that promotes advances in the fields of transfusion, cellular therapies, and transplantation medicine. Through its Cord Blood for Research Program, Canadian Blood Services’ Cord Blood Bank provides investigators with cord blood products to facilitate research that promotes advances in the fields of transfusion, cellular therapies, and transplantation medicine.​ The Cord Blood for Research Program distributes cord blood products that do not meet the criteria for storage in the cord blood bank but still contain enough cells for meaningful research and for which mothers’ research consent has been obtained.
!!! >>> merged with https://www.re3data.org/repository/r3d100012653 <<< !!! RDoCdb is an informatics platform for the sharing of human subjects data generated by investigators as part of the NIMH's Research Domain Criteria initiative, and to support this initiative's aims. It also accepts and shares appropriate data related to mental health from other sources.
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Population Data BC (PopData) is a multi-university, data and education resource facilitating interdisciplinary research on the determinants of human health, well-being and development. Providing a range of services to researchers and data providers, PopData strives to ensure that researchers have timely access to the data and training they need to address research questions on population health. Research using these data informs policy-making and leads to healthier communities.