A clearing house for diagnostic testing: the solution to ensure access to and use of patented genetic inventions?
(57/509)
In genetic diagnostics, the emergence of a so-called "patent thicket" is imminent. Such an overlapping set of patent rights may have restrictive effects on further research and development of diagnostic tests, and the provision of clinical diagnostic services. Currently, two models that may facilitate access to and use of patented genetic inventions are attracting much debate in various national and international fora: patent pools and clearing houses. In this article, we explore the concept of clearing houses. Several types of clearing houses are identified. First, we describe and discuss two types that would provide access to information on the patented inventions: the information clearing house and the technology exchange clearing house. Second, three types of clearing houses are analysed that not only offer access to information but also provide an instrument to facilitate the use of the patented inventions: the open access clearing house, the standardized licences clearing house and the royalty collection clearing house. A royalty collection clearing house for genetic diagnostic testing would be the most comprehensive as it would serve several functions: identifying patents and patent claims essential to diagnostic testing, matching licensees with licensors, developing and supplying standardized licences, collecting royalties, monitoring whether users respect licensing conditions, and providing dispute resolution services such as mediation and arbitration. In this way, it might function as an effective model for users to facilitate access to and use of the patented inventions. However, it remains to be seen whether patent holders with a strong patent portfolio will be convinced by the advantages of the royalty collection clearing house and be willing to participate. (+info)
Data sharing and intellectual property in a genomic epidemiology network: policies for large-scale research collaboration.
(58/509)
Genomic epidemiology is a field of research that seeks to improve the prevention and management of common diseases through an understanding of their molecular origins. It involves studying thousands of individuals, often from different populations, with exacting techniques. The scale and complexity of such research has required the formation of research consortia. Members of these consortia need to agree on policies for managing shared resources and handling genetic data. Here we consider data-sharing and intellectual property policies for an international research consortium working on the genomic epidemiology of malaria. We outline specific guidelines governing how samples and data are transferred among its members; how results are released into the public domain; when to seek protection for intellectual property; and how intellectual property should be managed. We outline some pragmatic solutions founded on the basic principles of promoting innovation and access. (+info)
Why "radiation oncology".
(59/509)
Radiotherapy continues to be a major treatment for solid tumours and is a cornerstone of modern oncology. The term 'radiation oncology' describes the integration of radiation therapy into the complexity of multi-modal therapy. Over the last ten years the crucial role of radiation therapy as part of multi-modality protocols in cancer care has been documented in numerous Phase III trials. Advances in treatment technology as well as the underlying biology of tumour resistance mechanisms will further strengthen the role of radiation oncology. The scientific role of radiation oncology is reflected by the increase in the number of papers related to radiation oncology in resources like Medline. In order to reflect the growing scientific importance of radiation oncology, radiation physics and radiation biology, we have initiated Radiation Oncology as the first open access journal in the field. Open access allows for a rapid and transparent publication process together with an unequalled opportunity to reach the widest reader spectrum possible. (+info)
Patient data synchronization process in a continuity of care environment.
(60/509)
In a distributed patient record environment, we analyze the processes needed to ensure exchange and access to EHR data. We propose an adapted method and the tools for data synchronization. Our study takes into account the issue of user rights management for data access and decreasing the amount of data exchanged over the network. We describe a XML-based synchronization model that is portable and independent of specific medical data models. The implemented platform consists of several servers, of local network clients, of workstations running user's interfaces and of data exchange and synchronization tools. (+info)
An open source model for open access journal publication.
(61/509)
We describe an electronic journal publication infrastructure that allows a flexible publication workflow, academic exchange around different forms of user submissions, and the exchange of articles between publishers and archives using a common XML based standard. This web-based application is implemented on a freely available open source software stack. This publication demonstrates the Dermatology Online Journal's use of the platform for non-biased independent open access publication. (+info)
Design considerations for a web-based database system of ELISpot assay in immunological research.
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The enzyme-linked immunospot (ELISpot) assay has been a primary means in immunological researches (such as HIV-specific T cell response). Due to huge amount of data involved in ELISpot assay testing, the database system is needed for efficient data entry, easy retrieval, secure storage, and convenient data process. Besides, the NIH has recently issued a policy to promote the sharing of research data (see http://grants.nih.gov/grants/policy/data_sharing). The Web-based database system will be definitely benefit to data sharing among broad research communities. Here are some considerations for a database system of ELISpot assay (DBSEA). (+info)
Feasibility of data exchange with a Patient-centered Health Record.
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A patient-centered health record is a personal health record that is patient-owned, patient-managed, and that represents the health information important to patients in the ways they prefer to represent it. The Patient-centered Health Record (PcHR) was developed to address these needs. Integration with traditional electronic health records adds significant value, and we used a national showcase to demonstrate the feasibility of exchanging health information through document level interoperability with commercial enterprise clinical systems. (+info)
Patient-centered design for a personal health record system.
(64/509)
Our objective for this project was to design a user interface (UI) for a patient-centered personal health record system that models how patients view their health information. We assessed user needs, examined how patients label and categorize health information, and evaluated two user interfaces that we designed for the Patient-Centered Health Record (PcHR) system. Our design process focused on discovering useful content and ensuring that the UI was intuitive, easy to use, and helpful for users. (+info)