Webinar: Genetics in ILD - Genotypes, Phenotypes and the Future - video
Watch and listen to Raphaël Borie, Hôpital Bichat - Claude-Bernat, France, Coline van Moorsel, St. Antonius Hospital, Netherlands with Steve Jones, EU-IPFF President as the moderator on February 8th 2021.
Please be aware of the Survey about genetic tests in interstitial lung disease
Recent advances in medical science have increased our understanding of the role of genetic factors (DNA) in interstitial lung diseases (ILDs), especially in some types of pulmonary fibrosis. Yet, the role of genetic tests (DNA tests) still has to be understood, so that hospitals can meet the expectations of patients, their families and the doctors.
We are a European group of doctors, researchers, patients, and carers, who have been asked to find out your views on this important subject so that we can review the current situation and make recommendations based on your views.
Your answers will be gathered together with those of the Lung doctors, who will also be taking a similar survey. Their answers are presumably based on medical knowledge and experience, To make optimal use of this medical knowledge, it should be aligned to what is important to patients and their relatives. It is thus vital we also get the patient and carer view, so we have the entire picture.
In summary, the aim of this survey is to improve the provision of information to and care for patients with an ILD and their relatives in order to empower them in decision making on disease in their families.
We expect that you will need 10 to 20 minutes to complete this survey. Once started the survey needs to be completed in one go. You can choose six European languages versions of the survey: English, Dutch, French, German, Italian, or Spanish. We protect your privacy and don't collect or save personal data. The aggregated results will be presented at websites, meetings, or in journals.
A final important note: please complete the survey only once
• If you are a patient with an ILD (either or not a relative of another ILD patient as well), then choose the option ‘ I am a patient with an ILD’ in the introduction questions.
• If you are a relative of a patient with an ILD, but not (or not yet) a patient with an ILD, then choose ‘I am a relative of a patient with an ILD’ in the introduction.
Follow the link below to the introduction questionnaire, which is composed of five general questions. When you have completed this questions, you will be directed to the appropriate survey. To make this survey reflect patient and carer views we would ask you to share it with your doctor, other patients and their loved ones.
You may open the survey in your web browser by clicking the link below:
Survey about genetic tests in interstitial lung disease - introduction patients and relatives
If the link above does not work, try copying the link below into your web browser:
https://research-academie.antoniusziekenhuis.nl/redcap/surveys/?s=9CDTPXXMNE
We appreciate your time and contribution!
Sincerely,
Michelle Terwiel
On behalf of the ERS taskforce on genetics in pulmonary fibrosis chaired by dr Raphaël Borie and Coline van Moorsel.*
If you have any questions or comments then please contact Michelle Terwiel:
m.terwiel@antoniusziekenhuis.nl
*Reference ERS taskforce on genetics in pulmonary fibrosis
