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Peter O'Donnell is a freelance journalist who specializes in European health affairs and is based in Brussels, Belgium.
The European Reference Network on Rare Respiratory Diseases-a grouping of specialists from more than 60 dispersed centers-has won approval of EU funding to maximize clinical trial efficiency in Europe.
Clinical research into rare respiratory disorders is likely to get a boost from a new grouping of specialists in more than 60 centers across Europe. The “European Reference Network on Rare Respiratory Diseases,” which has just won formal approval under a European Union funding scheme, is creating a five-year program of activity that includes maximizing the efficiency of clinical trials in Europe.
Initially, the network, known as ERN-LUNG, will aim to create an infrastructure to promote research in the different sub-themes of rare respiratory diseases that it is focusing on. "Recruitment of sufficient numbers of patients for clinical and other investigations or availability of data or bio-samples will be eased dramatically," it predicts.
ERN-LUNG will particularly target pulmonary hypertension, cystic fibrosis and other forms of bronchiectasis, primary ciliary dyskinesia, alpha1 antitrypsin deficiency, interstitial lung diseases, mesothelioma, and chronic lung allograft dysfunction. In each of these areas it has brought together acknowledged expert centers in 12 European countries-mostly university hospitals-to make the best use of them in providing care to the scattered population of patients with these conditions. The project also has input from patient organizations, policymakers, foundations, trade organizations, and ethics specialists.
In each of these sub-themes, support will be given to ongoing clinical trials of new drugs or other therapeutic interventions. A specialized committee on research and clinical trials "will make best use of the extremely positive experience of several of the pre-existing networks (CF, PCD, AATD, nonCF-BE) in pushing new orphan drug development forward, by establishing clinical trials networks in collaboration with the European Clinical Research Infrastructure Network," says the network. It will also develop tools and training for protocol review for doctors and patients. In addition, each sub-theme will be encouraged to develop registries, and close links have been established with the European platform for rare disease patient registration, at the EU's joint research centre in Ispra, Italy.
The grouping is one of 23 similar networks that the EU will pump more than $20 million over the next five years. Each will explore a broad area of a rare disease cluster. In addition to ERN-LUNG, other networks (with equally catchy acronyms) cover different aspects of cancer-in adults with solid tumors, genetic tumor risk syndromes, or pediatric cancer with a focus on haemato-oncology. Some will deal with craniofacial or congenital anomalies and malformations, organ transplantation in children, skin or metabolic disorders, endocrine conditions, or epilepsies. And networks have been approved in kidney, neurological, hematological, neuromuscular, eye, heart, hepatological, musculoskeletal, autoimmune or vascular diseases.
Altogether, these networks bring together hundreds of research centers and hospitals, and thousands of specialists. The diseases targeted are in many cases those that have shown significant improvement in diagnosis and treatment over recent years in highly specialized centers. And each of them is obliged, as a condition of its approval, to promote clinical research.