IPF online gives more insight into the disease and the disease course to people with IPF and their practitioners.
You can keep track of your medical data online and securely.
You will find information and the possibility to communicate with your caregivers online. Erasmus MC started here as the first hospital. You can check with your practitioner whether IPF is available online in your hospital.
IPF online is meant to better understand your individual situation. IPF online can support you at:
By answering questions every three months, you and your caregiver will know better how you are doing in the course of time. You will receive an email if you can fill in further questions. If you give permission for this, your healthcare provider can view your answers and give advice if necessary.
The completed answers will be discussed with you during the consultation. If you have a question in between, you can do so via the eConsult or via the normal route.
IPF online is intended for people with IPF. It does not matter whether you have recently had this disease or for some time.
With this website, where the patient keeps track of data, information is recorded in a structural way. This could provide new insights into the course of IPF and the impact on your daily life. In order to improve care, this information is important. We would therefore like to use this information anonymously for research. You can also use this website if you do not want to participate in research. Further information about this can be found after registration.
Pulmonary fibrosis is a chronic condition in which too much scar tissue (fibrosis) is formed in the lungs, as a result of which the lung tissue functions less well. This means that the lungs can not absorb enough oxygen. This leads to complaints of shortness of breath, coughing and fatigue.
There are many causes for pulmonary fibrosis, such as inhaling harmful substances, underlying rheumatic diseases, use of certain medications and many other things. In some people there is no cause for the pulmonary fibrosis, this form is called idiopathic pulmonary fibrosis (IPF).
IPF is the most common form of pulmonary fibrosis. Idiopathic comes from the Greek and means: unknown cause. It is thought that this form of pulmonary fibrosis is caused by an abnormal reaction of the lung tissue after damage, eventually causing scar formation in the lungs. We estimate that there are between 1000-3000 people in the Netherlands with this disease. The disease has a varying course, but eventually the fibrosis will increase and lead to severe lung function limitations.
Unfortunately, there is currently no healing drug for IPF. Lung transplantation is a possibility for a limited group of people. Fortunately, much research has been done into the treatment of IPF in recent years with promising results. Two medicines are now available for IPF, nintedanib (Ofev®) and pirfenidone (Esbriet®). These medicines can not cure the disease, but inhibit scarring. This slows the deterioration of lung function and improves the prognosis. These medicines are currently reimbursed for eligible people and may only be prescribed in specialized centers. In addition, the treatment consists of supporting measures such as exercise and extra oxygen.
Fortunately, the research at IPF is in full development. This involves, among other things, the cause, treatment and improvement of the quality of life at IPF. In a number of hospitals in the Netherlands it is sometimes possible to participate in these studies. You can best inform your pulmonologist about the possibilities. We will also provide more information on this site.
The helpdesk can not answer medical questions. We strive to answer your questions by e-mail within 24 hours (on working days). All helpdesk employees have a confidentiality obligation and work protocols.