Interstitial Lung Diseases (ILD) comprise more than 150 different diseases. Each disease effects only a small percentage of the population, and therefore all of them are acknowledged by the World Health Organisation as rare / orphan diseases. However, the small numbers of patients are a significant disadvantage in scientific research.
To optimize research possibilities the Biobank was established by the ILD Center of Excellence more than 15 years ago. The Biobank-project aims to register all available medical information of patients with specific ILDs. Moreover, the Biobank saves several patient materials like blood, tissue, and BAL-fluid. Until now, data of more than 8000 Dutch patients have been collected.
Participate and contribute to scientific research!
Biobank for interstitial lung diseases
Interstitial lung diseases (ILDs) are rare. They include over 150 different diagnoses, the most common of which are sarcoidosis and lung fibrosis. Thorough scientific research into these diseases requires large numbers of patients. Only then is it possible to understand the causes and treatment of these diseases. So it’s important to collect disease data of as many patients as possible. To this end, the Dutch ILD Expertise Centre has set up a so-called biobank. This biobank has now been operational for 15 years and stores the (anonymised) data of over 8,000 patients with a rare ILD. The biobank also stores patient materials, such as samples of blood, DNA, lung fluids and tissues.
Why create a biobank for interstitial lung diseases?
These diseases are so rare that it takes a relatively long time to collect enough patients for thorough scientific research. A biobank is useful for this, so we are looking for patients who have these diseases and who want to participate in the research. These can be patients of the St. Antonius Ziekenhuis but also of other hospitals. In addition, you can also contribute to the biobank if you are a healthy relative of a patient with a rare lung disease.
What does participation involve?
- You are asked to donate three tubes of blood at a blood collection service near you.
- You are asked to fill in some questionnaires at home (which will take 2 to 3 hours).
If you decide to participate in the biobank, you will have to give permission for the following:
- Data will be retrieved from your medical file and used for scientific research.
- Body materials that are obtained from you will be stored.
- Any stored materials that were collected during examinations or tests you have previously undergone will be retrieved.
- We will ask your pharmacy which medications you are using.
What will be done with my data and blood samples?
These materials and data will exclusively be used for scientific research into ILD.
Annelies Wind MSc