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INHERITED NEUROMETABOLIC DISEASES INFORMATION NETWORK. http://www.innermed.eu/. Project Overview.
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INHERITED NEUROMETABOLIC DISEASES INFORMATION NETWORK http://www.innermed.eu/
Project Overview The Project "Inherited NeuroMetabolic Disease Information Network" (InNerMeD-I-Network, 2012 12 12, Second Health Programme 2008-2013) is an European project, started on the 1st of April 2013.
Why InNerMed Inherited NeuroMetabolic Diseases (iNMDs) represent an important group of Rare Diseases constituted by genetic metabolic disorders showing clinical neurologic/cognitive symptoms at any time during the progression. Data on iNMDs are scarce as well as poorly disseminated outside the restricted group of experts that are also inadequately connected.
Why InNerMed (2) There is a lack of awareness about these conditions that can delay the diagnosis and the start of the treatment, with consequent tragic results. Increasing awareness is therefore the first crucial step in fighting these conditions.
InNerMed: AIMS InNerMed aims to create a multimedial network of information targeted on research, diagnosis and treatment of inherited neurometabolic diseases (iNMDs) and based on the collection and exchange of validated information among scientific communities, health professionals, patients, patient associations public health authorities, pharmaceutical companies and other interested parties. .
GeneralObjectives The general objectives of the InNerMeD project are: • to increase the current knowledge on iNMDs • to speed up the timely and precise identification of patients, who thus may benefit from the available (experimental and marketed) treatments • to favour biomedical research.
detailed Objectives (1) • 1) to create an Information Network in the field of iNMDs aimed at: • increasing awareness on these conditions among physicians, patiients and general stakeholders to anticipate diagnosis and, when available, supply an adequate therapy; • • strengthening research capacities and foster technological innovation in favour of the population affected by iNMDs; • . • providing practical support for sharing experiences at global levels on iNMDs; • disseminating knowledge on clinical and experimental approaches for diagnosis and treatment of iNMDs, in order to make patients and families empowered and aware as real actors for the correct management of the disease.
Detailed Objectives (2) 2) To create a web-based platform with user-friendly access. Through it all validated information on iNMDs, therapies, diagnosis and research will be collected, shared and then disseminated to the Network participants and stakeholders. The Platform will also act to connect the Network nodes, to stimulate collaborative working and to promote the networking activities.
These objectives will be achieved by: • The collection, harmonization, simplification, validation, organization and dissemination of all the available scientific data and information on iNMDs, including those regarding • centres of expertise, • websites of reference • recommendations, • guidelines, • and all data on diagnosis and treatment of iNMDs • .
PARTNERS BRAINS FOR BRAIN FOUNDATION, I CENTER FOR METABOLIC DISORDERS UNIVERSITY OF COPENAGHEN, DK UNIVERSITY OF ZAGREB SCHOOL OF MEDICINE, HR HOSPITAL SANT JOAN DE DÉU, MADRID, E GIANNI BENZI PHARMACOLOGICAL RESEARCH FOUNDATION , I
METHODS 1 NETWORKING: The core Network is represented by the initial partners while other research centres and experts' groups will be included on the basis of their competencies to continuously help grow the Network. The Network also complies with the criteria for Networks stated in European Health Programmes on Rare Diseases (European Reference Network, ERN) and in the Paediatric Regulation (European Network of Paediatric Research at the European Medicines Agency, Enpr-EMA)..
METHODS 2 • IT PLATFORM DEVELOPMENT: • a publicly available infrastructure assuring user-friendly access and easy exchange of information among users, who do not necessarily need specific technical competences. It will include: • A project web portal based on a Content Management System for publicising the project and disseminating its results; • An electronic repository to make available all information provided through the project; • Interactive systems for sharing data and files.
METHODS 3 PRODUCTION OF DOCUMENTS, GUIDELINES AND RECOMMENDATIONS: All collected and integrated information will be assessed for scientific evidence and assembled in guidelines and recommendations summarising current existing best practices and most recent advancements in NMD diagnosis and treatment, including biomarkers and genetic information.
WorkPackages • WP1 - COORDINATION OF THE PROJECT • WP2 - DISSEMINATION OF THE PROJECT • WP3 - EVALUATION OF THE PROJECT • WP4 - NETWORKING • WP5 - IT PLATFORM • WP6 - PRODUCTION OF SCIENTIFIC DOCUMENTS TO BE DISSEMINATED BY THE NETWORK • WP7 - ACTIVITIES FAVOURING BIOMEDICAL RESEARCH
WP6 Production ofscientificdocumentstobedisseminatedby the network
WP6 Production ofscientificdocumentstobedisseminatedby the network
WP6 Production ofscientificdocumentstobedisseminatedby the network
ExpectedOutcomes • This network project will contribute to: • reduce the gap affecting iNMDsin different ways. • involve a large number of actors and create a critical mass of competences(according to the provisions of Directive 2011/24/EU). • Increase awarenesson iNMDsepidemiology • speed up the timely and precise identification of patients to which apply the available treatments. • Translate scientific breakthroughs into clinical practice
Project Impact The Network will contribute to reduce the knowledge gap affecting iNMDs in different ways: • providing a critical mass of competences, instead of a dispersed expertise; • providing validated customized information at all levels about iNMDs • stimulating innovative research projects to enforce European leadership on iNMDs
Project Impact (2) • fostering the identification of group of patients to be included in biomedical research (registries and clinical trials); • translating scientific breakthroughs into clinical practice; • generating social benefit to the aim of establishing a standard of care for patients with iNMDs across Europe.
