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Latest News
Could a general rare disease guideline for health professionals help facilitate innovative strategies for working with patients?
Working from the premise that there are simply too many rare diseases identified to provide tailored guidelines for each and every one, the authors of an intriguing article published in the journal Health Policy put forward the notion that a general rare disease care guideline is needed that emphasises a flexible and innovative approach on the part of healthcare professionals, who frequently provide care and treatment for rare disease patients without a specific protocol for good clinical practice. The authors contend that health professionals (including physicians, therapists, nurses, and others) must apply novel techniques and procedures in order to deliver rare disease healthcare services that are effective. Innovative work behaviour (defined as employee-led initiation and the realisation of new ideas within a work role designed to improve role performance) is needed in the absence of specific treatment options for many rare diseases. Such innovation might involve initiating novel approaches or may build upon and adapt existing processes, services or products.
Furthermore, a general guideline that guides rare disease care and treatment could point healthcare workers toward relevant information, such as the pan-European rare disease and orphan drug informational database Orphanet, which the authors state should be “…integrated in the process of establishing treatment guidelines for rare diseases on obtaining relevant information”. The guideline could provide an overview for adopting flexible work roles, networking within a multidisciplinary team to avoid duplication, and establishing cooperation with specialised health centres and between professionals. Such arrangements could empower nurse and therapist workers occupied with the daily care and treatment processes for rare disease patients. The authors call for strengthened communication, in order to allow all healthcare professionals to “feel responsible for displaying innovative behaviour at each stage to improve patients’ long-term care”. A dedicated rare disease guideline could challenge the uncertainty stemming from an absence of specific disease standardised protocols.
Read the PubMed abstract
This article appeared in the 18 April 2012 edition of OrphaNews Europe. Read the latest edition of the newsletter here.
Recommendations for Centres of Expertise adopted unanimously by the European Union Committee of Experts on Rare Diseases
On 24 October, during the third meeting of the European Union Committee of Experts on Rare Diseases (EUCERD), the Recommendations on Quality Criteria for Centres of Expertise for Rare Diseases in Member States were unanimously adopted by the 51-member EUCERD, which has representatives from all 27 EU Member States and from all domains relevant to the fields of rare diseases and orphan drugs, including academia, government, the biopharmaceutical industry and patient organisations. This is the first set of recommendations adopted by this committee. Developing Centres of Expertise and European Reference Networks in the field of rare diseases has been proposed in the Council Recommendation on an Action in the Field of Rare Diseases and more recently in the Cross-Border Healthcare Directive as a means of organising care for the thousands of heterogeneous rare conditions affecting scattered patient populations across Europe. In order to share knowledge and expertise more efficiently, the EUCERD recommendations seek to introduce harmonious standards of quality practices by elaborating criteria for the Member States to incorporate into their process to designate Centres of Expertise.
EUCERD, formally the Rare Diseases Task Force, has already issued a series of reports investigating the state-of-the-art in the field. The 45 Recommendations build upon this work already achieved and assist the Member States to develop their healthcare pathways at both the national and EU levels in the field of rare diseases. The recommendations cover the Mission and Scope of the Centres of Expertise; the Criteria for Designating Centres of Expertise; the Process of Designating and Evaluating National Centres of Expertise; and the European Dimension of Centres of Expertise.
The EUCERD Recommendations on Quality Criteria for Centres of Expertise for Rare Diseases in Member States are available on the EUCERD website.
This article appeared in the 16 November 2011 edition of OrphaNews Europe. Read the latest edition of the newsletter here.
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