Patient participation in asthma research: The DZL collects impressions from those affected and their relatives

Patient participation is important in research!
The participation of patients is a central pillar of modern medical research. Only by taking into consideration the needs of those affected and their relatives will research become really relevant. Patient participation functions in many different ways. Those affected can, for instance, be involved through interviews and group discussions or participate directly in the scientific project design. Staff members at the German Center for Lung Research (DZL) are examining asthma and would like to include patients closely in their research. For this reason, an online questionnaire and an information video have been developed, which explain why the opinion and impressions of the patients is so important and how they can help in the research process.

Asthma research: what is our aim?
What does asthma mean to those affected – and how can this best be treated? Those are the questions posed by the  All Age Asthma Cohort (ALLIANCE) of the DZL. Asthma can occur at various stages in life and in completely different forms and with varying characteristics. In the ALLIANCE Asthma Cohorts and related projects, researchers at the DZL are trying to find out how the various forms of asthma occur and progress and how these can best be treated. They have also set up the ALLIANCE cohorts, which in the meantime comprise over 1.000 patients and healthy persons between six months and 84 years of age. The patients are regularly examined and questioned in order to find out how they are feeling and which immunological and other changes are connected with the asthma. Many Centers in Germany are participating in this. Researchers from Kiel, Lübeck, Borstel, Großhansdorf, Hanover, Munich, Gießen, Marburg, Bad Nauheim and Cologne are involved. 

What have we achieved up to now?
Thanks to the test persons and the research support, much has been achieved: more than 1.000 patients and healthy people have been able to be characterized by means of questionnaires, lung function tests and other methods of measuring the level of airway inflammation. In addition, data on the symptoms, progression of the disease, life circumstances and environmental factors as well as a wide range of biomaterials such as blood, nasal swabs, sputum and others have been collected and analysed. In so doing, it was discovered for example that a certain immune signature (many eosinophilic granulocytes and  a lot of Immunoglobulin G -IgE – in the blood) accompanies a form of asthma which starts in childhood and can last until adult life. It could also be shown that a specific B-cell (IgA-positive) is increased in adults with asthma of the small airways. Such results can help to provide patients with better advice, to develop prevention strategies and to adapt future therapies. 

How can those affected and their relatives support the research process? 
The DZL is looking for asthma patients of all ages and their relatives who would be willing to share their expectations and ideas on asthma research via an online questionnaire. Whether you are a young child or an adult, affected yourself or as a parent, family member or friend: every experience with regard to dealing with asthma can help the researchers at the DZL. In this regard, an online questionnaire has been designed, which will take about 5 minutes to complete. 
The data collection is completely anonymous. You can find the questionnaire directly via this link or by scanning the QR Code in the picture.

Text: Muthmedia GmbH

Photo: Muthmedia GmbH