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What is INCbase?

INCbase is an international study on chronic inflammatory demyelinating polyneuropathy (CIDP). CIDP is a rare disorder that affects different people in different ways. The symptoms, treatment response, and disease course may vary from person to person. By collecting the same information from large numbers of patients with CIDP from around the world we will be able to understand the disease and improve the care for CIDP patients.

 

What are the goals of INCBase?

INCbase has the following goals:

  • to develop a model that can predict the effect of treatment on the long-term outcome
  • to discover tests that will be able to to improve the diagnosis of CIDP measure disease activity and predict prognosis 
  • to better understand the symptoms that help define CIDP
  • to better understand how CIDP impacts short and long-term disability and quality of life 
  • to describe physician and patient satisfaction with different CIDP treatments
  • to improve our understanding of the immunology of CIDP
  • to understand why CIDP develops, and why some patients need long courses of immunotherapy and others do not

During the course of the study, this section may be updated and new aims may be added.

 

Who can join INCbase?

Any patient that is suspected of having CIDP can join INCbase.

 

How can I join INCbase?

Talk to your neurologist about INCbase. In order to join your neurologist must be affiliated with a center that is part of the INCbase network.

 

Which centers are members of INCbase?

For a current overview of the centers that are members of INCbase please visit this page.

 

What does it mean to participate in INCbase?

If you participate in INCbase we will collect information about your symptoms, disease course, and prior treatments, as well as document certain examination findings such as your strength, sensation, and reflexes. We will record the results of prior testing that you may have had (like nerve conduction tests, EMG, or lumbar puncture), but will not ask you to repeat any of those tests. In some cases we may collect blood samples, although this is not required for participation. This study will not impact the treatment that you recieve. Your treatment will remain at the discretion of your neurologist, and will not be influenced by participating in this study. Your local doctor or researcher will provide you with detailed patient information and will ask you to sign an informed consent form if you want to participate. 

 

How do we use your data?

The INCbase investigators have made it a top priority to ensure that all of your personal identifying information is protected. Your data is entered in the INCbase database using an unique code. No personal information is entered into the database, and no personal information will be shared with any other party. Only your local doctor or researcher can link this unique code to you. Your data will be handled, stored and shared only when this is in accordance with any law that is applicable to your situation and country. The database is run according to the General Data Protection Regulation (GDPR) from the European Union. Only de-identified data will be reviewed for research. The data will be used to answer scientific questions that are raised by investigators that are part of the INCbase network. The topics of these studies are described under: “What are the goals of INCbase?”. 

 

How can I stop participating in INCbase?

Participating in INCbase is voluntary and you may always choose to stop. Please contact your local doctor or researcher to discuss this.

 

Where can I find more information on CIDP?

For more information on CIDP please visit the following websites: