14 April 2020
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Collector items that help treating rare lung disease

The ILD Biobank stores tissue of patients with Interstitial Lung Disease (ILD) for scientific research to find treatment. Fifteen years of collecting body material and data from patients, it is most likely the biggest in the world, situated in the old swimming pool of the St. Antonius Hospital. And it is leading to results.

To find a treatment for a disease you need many data and body material from many patients. For ILD this is difficult as these constitute a group of more than 150 different rare disorders.  So, 15 years ago the ILD Expertise Center started collecting body tissue and data of patients with these disorders on a big scale.  Now their biobank contains material of more than 7000 patients.  It is still growing, and fast, with about 800 new patients every year. In 2012, the ILD Biobank also stores residual material, body material that is taken for diagnosis or during surgery.

Collecting and collaborating

More and more people now seek collaboration with the ILD biobank. And that is exactly what the researchers hoped would happen. They encourage other ILD researchers to use their material. It increases the likelihood of finding a treatment.

Prof. Grutters Pulmonologist at the ILD Expertise Center: “Fifteen years of collecting and doing research already learned us a lot. We found genes for hereditary lung disease and managed to improve the treatment of ILD. We are doing much research on the two more common ILD’s: sarcoidosis and lung fibrosis but also started research on the extreme rare disease of lymphangioleiomyomatosis, (LAM). We also discovered that lung fibrosis in rheumatoid disease is related to a genetic variant.”

New facility

The ILD biobank and ILD Expertise Center is located in the St. Antonius Hospital in Nieuwegein, the Netherlands. They try to find a better treatment for ILD. With funding by the TopZorg programme, the ILD Expertise Center opened a new facility, situated in the old swimming pool of the Antonius Hospital where once patients received physiotherapy. With fourteen freezers ranging from -20°C to even -150°C, researchers can use the materials for decades to come.

About ILD

Interstitial lung disease (ILD) is a group of rare disorders of the deeper long tissue, characterized by inflammation and scarring (fibrosis) of the alveoli.  This can lead to serious shortness of breath and even death. There are more than 100 different types of ILD, each with a different disease course. The cause of most ILD disorders is unknown, so it is difficult to find a treatment

ILD-Expertise Center (in Dutch)

From patient to practice

An ILD biobank coordinator sharing her experience.

Annelies Wind is biobank coordinator at the ILD, responsible for the handling of the biobank data. Her colleague coordinator Claudia Roodenburg does the same for the actual samples. Annelies Wind briefly explains the process. “The ILD biobank gets most samples and data from patients of the St. Antonius Hospital, our home base.  Although we also have patients and samples coming from other hospitals. Almost all patients who attend the ILD clinic consent to use of their samples and data for research. These patients, with often ultra rare disorders, realize their contribution is valuable for research.

Who are the users of your biobank?
Wind:  Our material is most used by researchers in the St. Antonius Hospital. But we are getting more and more requests from other Dutch scientists and elsewhere in Europe and the United States. About five requests per year now, on average.

How do researchers know to find your collection?
Wind: “That is difficult to say. I think mostly via personal contacts of our researchers. However, just recently a Swiss research group asked for serum samples through the BBMRI-ERIC catalogue. The ILD biobank collection can be found on BBMRI.nl CatalogueOrphanet, the portal for rare diseases and orphan drugs, and RD-connect a platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research.

How do you handle these requests for data and samples?
Most requests come to us by email. We consider all requests and send all data encoded, with or without samples in the mail. It is a lot of handwork and we must check the protocols carefully as we don’t handle such requests daily.

The ILD biobank organised a Biobank Information day for patients and their families. Wind: “We organised it to thank the patients for participating in our Biobank. Everything would not have been possible without them. On that day, researchers presented examples of results made possible with their data and samples. For instance, the careful registration of data and materials over a long period of time enabled a more personalized treatment for idiopathic lung fibrosis. It was quite a success; we had some 400 visitors who were eager to learn more about our research. What I most heard that day was ‘Thank you, now at last I hear about what you use my material for'."

First two photos by: Geeske Stoker