Chronic inflammatory demyelinating polyneuropathy (CIDP) is such a remarkably heterogeneous disorder – one with diverse presentations, a highly variable disease course, and differing, often unpredictable treatment responses. Neurologist-researchers around the world have established research registries in recent years to prospectively study patients over time. However, according to Foundation GMAB member Dr. Jeffery Allen, “they all collect slightly different sets of data and have slightly different inclusion criteria, and they don’t talk with each other. And even in large countries, the registries don’t include sufficient numbers of patients to address some of the most pressing questions. To really understand the rare immune-mediated disease, we need a worldwide database, so that existing databases can talk with each other, and so that countries that don’t have registries, have a place to [register] their patients,” he said.
This vision, for an international collaboration, is now nearing a reality, with the development of an international registry called the Inflammatory Neuropathy Consortium Base (INCbase). INCbase is an international registry for CIDP patients led by an international collaboration of CIDP experts. INCbase provides a state of the art modular research database that members may use to collect prospective standardized clinical data and, optionally, biomaterials. This infrastructure will allow researchers to perform global and unprecedented collaborative studies. INCbase has a broad scope as evidenced by the currently defined objectives to include:
- To develop a prognostic model to predict short and long-term treatment response in CIDP patients at the start of treatment
- To discover clinical, electrophysiological and biological biomarkers for diagnosis and disease activity
- To describe variation in clinical and electrophysiological characteristics of CIDP to define the spectrum and boundaries of CIDP
- To describe short and long-term outcomes at impairment, disability and quality of life levels of (subgroups of) CIDP patients
- To describe physician and patient perspectives on and satisfaction with different treatments that may be used for CIDP, including plasma-exchange and subcutaneous immunoglobulin
- To deepen knowledge on CIDP pathophysiology, including investigating immunological pathways underlying CIDP
The Foundation is proud to support this promising research which involves many of the experts on our Global Medical Advisory Board. For more information and locations sites worldwide see: www.incbase.org.