Primary immunodeficiency diseases, myositis, autoimmune neuropathies, even blistering diseases! Intravenous immune globulin (IVIG) has been found to work in many different conditions. To assess whether patients with a specific disease will improve with IVIG therapy, scientists conduct clinical trials, or studies. These studies are experimental by nature, and many patients participate because the usual treatments haven’t worked for them.
How do you find and participate in clinical trials? The most complete resource available for finding clinical trials is the U.S. National Institutes of Health’s clinical trials website at clinicaltrials.gov. This website is a searchable database that lists all of the clinical trials that have been registered with the organization. Registration is a requirement for drug manufacturers.
Patient organization websites often list active clinical trials for the disease that they are concerned with. IG Living magazine’s Resources section lists most patient organizations. However, examples of some organizations that list trials include:
Immune Deficiency Foundation: www.primaryimmune.org
GBS/CIDP Foundation: www.gbs.cidp.org
Myasthenia Gravis Foundation of America: www.myasthenia.org
International Pemphigus and Pemphigoid Foundation: www.pemphigus.org
Would you participate in a clinical trial for an experimental treatment? Why or why not?
