Patient Survey

Dear participant,

We appreciate your interest in taking part in this survey. The outcomes of this survey will help patient-centered advocacy for chronic respiratory diseases.

Kindly review this informed consent form thoroughly and then determine whether you would like to participate in this voluntary and anonymous survey.

Sincerely,
Dr. Xander Bertels, PharmD, PhD

We want to better understand what people living with chronic respiratory diseases know about their disease and treatment goals. The findings of this survey will help us to advocate for more patient-centered care in daily practice. It will help us to represent and disseminate the patient's voice regarding the knowledge, understanding, and expectations of treatment goals.

Any person diagnosed with one or more of the following chronic respiratory diseases:
-       Asthma
-       COPD
-       Chronic rhinosinusitis (including nasal polyp syndrome)
-       Allergic rhinitis (also called hay fever)
 
This is an international survey. Eventhough the survey is hosted in Belgium, all patients with one of the diagnoses above can participate in this survey.

• You will be asked to complete 21 short questions, which will take about 3-5 minutes to complete.
• The questions will cover your knowledge and understanding of your disease state, current treatment goals, and what information you wish had been available.

• Participation is completely voluntary and you may stop the survey at any time.
• There are no consequences if you choose not to participate.

There are no direct benefits associated with taking part in this survey.

There are no risks associated with taking part in this survey.

The research is led by Dr. Xander Bertels, PharmD PhD, Dr. Diego M Conti, MD, and Prof. Dr. Peter W Hellings, MD, PhD affliated to EUFOREA. EUFOREA is an international non-profit organization with the aim of implementing optimal care in daily practice for patients living with chronic respiratory diseases. In case of questions, please contact: xander.bertels@euforea.eu

There is no project-specific funding involved in this survey.

• All data will be collected and analysed in an anonymous way.
• General demographic information (e.g. age range, gender, country) and information about your diagnosis will be collected.
• Your knowledge, understanding and expectations related to disease states and treatment goals will be collected.
• As the survey is anonymous, you will not be able to withdraw your data as we are not able to identify your response in the database.

• The pooled results of this survey will be shared with the Patient Advisory Board of EUFOREA, may be published in a scientific journal and elsewhere, and presented on conferences.
• We will use the insights to advocate for patient-centred care.
• The raw data will not be shared with third parties or used for commercial purposes.

• Your survey responses will be collected on a HIPAA-compliant form and stored securely using a HIPAA-compliant server, using the Jotform platform.
• Responses are automatically encrypted.
• Only authorised staff of EUFOREA will have access to the database.
• Data will be kept for 5 years after closure of the survey and then deleted.

Should you have any concerns or complaints about the conduct of this project (reference s60500), you are welcome to contact the Ethics Committee Research UZ / KU Leuven (EZ Research).
 
UZ Leuven, EC onderzoek
Herestraat 49
3000 Leuven
Belgium

Completion of the questionnaire will confirm your consent to participate in this project.

By clicking on “Next” you consent with the following:
-       I have read and understood the information above.
-       I agree to take part in this anonymous survey.
-       I give consent for my data to be used as described above.