EFA Partners with Work Package 9 on e-Newsletter and Questionnaire in U-BIOPRED
Over the past several months since the U-BIOPRED annual meeting in January, EFA has partnered with the European Lung Foundation (ELF), Asthma UK, Longfonds and other partners from Work Package 9 (WP9) to generate the U-BIOPRED Spring 2013 newsletter. The newsletter includes an interview with Xian Yang (a PhD student and researcher in the project), patients’ stories about their bronchoscopies, a medical test that can be challenging for patients, along with links to the most recent consortium publications. A web browser friendly version is available for the public to view by clicking here.
In addition, Pim de Boer of Longfonds has spearheaded efforts in collaboration with patient organisations, ELF and academic partners to create an exit questionnaire for participants in the WP3 study of the U-BIOPRED project. Their answers would provide valuable insights into their motivations to participate and on their experiences. The findings of the surveys will identify areas of improvement for future clinical projects and explore the expectations of patients participating in research projects. The questionnaire will be online and available in the languages of each centre where the U-BIOPRED clinical studies were conducted. The questionnaire has been developed for both adults and children involved in the paediatric study, making it accessible to all participants who took part in the WP3 clinical studies of the project. U-BIOPRED intends to launch the questionnaire in all languages by the end of April. EFA, represented by David Brennan is very much involved in all the developments
MeDALL Work Package 10 Seeks to Create Template for National Allergy Programmes
Work Package 10 (WP10), which is focused on ‘translational integration of systems biology outcomes into healthcare’, discussed its plans for 2013 at the MeDALL general meeting in Berlin this past January. Since results of the Finnish Allergy Programme (FAP) already show a national allergy programme yields real benefits, a positive outlook has been adopted to continue the project through its planned duration until 2018. Recent developments in Norway to develop a 10 year national allergy and asthma programme show real interest in replicating the achievements of the FAP elsewhere. Presently it is an opportune moment for actions by both MeDALL WP10 and the EFA Allergy Awareness Project to promote national allergy programmes wherever feasible.
Work package leader, Professor Tari Haahtela, encouraged WP10 to generate from Finnish experience and the developing Norwegian processes, to draft a “European template” which could be created for healthcare policy makers to fill in and adjust as per their country contexts and needs. The template will be completed in 2013 with two educational arms: (1) healthcare professionals and (2) patients and the general public. National programmes would be recommended to be a minimum of 5 years with a recommended duration of 10 years or more wherever possible.
The template will seek to encourage a significant shift in allergy treatment. Medical experts encourage ‘allergy tolerance’ and diminish the practice of allergy avoidance, unless necessary, until it becomes a small part of treatment with precise time limitations and scheduling. Both immunological and psychological tolerance will be key factors for reaching the target of relieving the burden of allergy and allow for major cost savings to European healthcare systems as well as patients and their families. The promotion of patient guided self-management of allergic conditions will be a necessity but many questions remain on how to achieve this with great success. An appendix with tools and issues from the MeDALL project will be included with the national programme template.
For more information on the Finnish Allergy Programme, refer to EFA’s report on its Helsinki workshop presenting the FAP as a best practice model from November 2012. In addition, EFA commends Prof. Haahtela as well as all other co-authors on their most recent publication concerning the ‘biodiversity hypothesis’ on allergic disease (a notion at the crux of the FAP) in the World Allergy Organisation Journal and strongly recommends all interested parties to reference this publication.