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http://www.treat-nmd.eu/about/related-projects/bioimage-nmd/

Project whose objective is to deliver combined structural and molecular imaging biomarkers with proven utility for the detection of therapeutic effects in patients with rare neuromuscular diseases (NMD). The project has three specific objectives: # To develop a new generation of muscle diffusion Magnetic Resonance Imaging (MRI). This diffusion imaging technology will be used to augment a state of the art simultaneous MRI / Magnetic Resonance Spectroscopic Imaging (MRSI) protocol for quantitative muscle imaging. # To provide a proof of principle in Duchenne Muscular Dystrophy (DMD) that simultaneous MRI/MRSI can be used as a biomarker to monitor therapeutic efficacy in clinical trials in neuromuscular diseases. # To develop a novel simultaneous Positron Emission Tomography (PET)/MRI technology to advance innovative drug development programs for personalized medicines based on Antisense Oligonucleotide technology

Proper citation: BIOIMAGE-NMD (RRID:SCR_003840) Copy   

•   Source: SciCrunch Registry

http://www.eurobiobank.org/

The EuroBioBank network is the first operating network of biobanks in Europe providing human DNA, cell and tissue samples as a service to the scientific community conducting research on rare diseases. It is the only network dedicated to rare disease research in Europe. By creating a critical mass of collections and facilitating the exchange of biological material, the EuroBioBank network helps accelerate research on these diseases. * Over 440,000 samples are available across the network and can be requested via the online catalogue. Approximately 13,000 samples are collected each year and 7,000 samples distributed in Europe and beyond. The biological samples are obtained from patients affected by rare diseases, including rare neuromuscular disorders. * The EuroBioBank Network is currently composed of 18 members, of which 16 biobanks from 8 European countries (France, Germany, Hungary, Italy, Malta, Slovenia, Spain and the United-Kingdom) as well as Israel and Canada. Goals * Identify and localize biological material of interest to researchers * Build a critical mass of rare disease sample collections * Distribute high quality material and associated data to users * Promote best-practice guidelines for biobanking activities * Disseminate knowledge and know-how to the scientific community through training courses * Enhance collaboration with the medical and scientific community in the field of rare diseases EuroBioBank acts as a clearing house or virtual bank, with all samples listed in the central online catalogue remaining in the possession of the member biobanks, where they are located and can be requested. The network was established by patients and researchers to facilitate research on rare diseases by guaranteeing quick and easy access to samples via an online catalogue. The catalogue lists the samples available throughout the EuroBioBank network by type of biomaterial. A search engine enables a search by disease or by bank contact. Once a sample has been located in the catalogue, it can be requested by email. Therefore, the biological material is exchanged faster. If a sample does not appear in the EuroBioBank catalogue, help can be provided to further search it at: eurobiobank (at) telethon.it Funding and Collaboration Originally funded by the EC between 2003-2006, the EuroBioBank received further EC support between 2007-2011 within the European Network of Excellence TREAT-NMD (FP6), which covered the cost sustained by Eurordis for the network coordination and website hosting. Each biobank of the network is financed by its own Institution or charitable organization. As of January 2012, the Fondazione Telethon provides the administrative support for coordinating the EuroBioBank network and hosting the website.

Proper citation: EuroBioBank (RRID:SCR_003599) Copy   

•   Source: SciCrunch Registry

http://www.researchrom.com/

ROM is an on-line Registry of Outcome Measures and associated tools designed to give guidance, information and assistance to international collaborative teams of reviewers undertaking the crucial task of choosing the right outcome measures (OMs) for neuromuscular disease trials and studies. It is also hoped that the Registry will reduce duplication of effort in this area. Outcome measures are the tests that investigators perform to decide whether a treatment being tested in a clinical trial is having any effect. These can come in many different forms from assessing how far a patient can walk in six minutes to looking at changes in their muscle through a biopsy and using the right outcome measure is a vital step in making sure a trial can really prove whether or not a treatment works. The searchable Registry contains information about OMs, such as a description, details of validation, availability, contact details for providers, and references to related documents including manuals and training videos. Review teams can record OMs by category as being considered for a specific study or trial and benefit from seeing the OM choices being considered by other review teams. A manual gives advice on how to assess and select OMs. Information contained in ROM may also prove useful to doctors, clinicians, physiotherapists, industry and other organizations with an interest in OMs relevant to NMD research.

Proper citation: Neuromuscular disease outcome measures (RRID:SCR_006267) Copy   

•   Source: SciCrunch Registry