Patients are being recruited for a study to evaluate the effectiveness of Pirfenidone in arresting the growth and reducing the size of plexiform and spinal neurofibromas in adults with neurofibromatosis type I (NF-1). Also called von Recklinghausen's disease, this is a rare genetic disorder characterized by the development of multiple non-cancerous tumors of nerves and skin (neurofibromas) and areas of abnormally decreased or increased coloration of the skin.
Patients will receive Pirfenidone three times a day, with meals, for two years. The study, sponsored by the Mayo Clinic, will also include MR imaging of tumors and six-month physician checkups. Patients must be 18 or older.
For information, contact the principal investigator, Dusica Babovic, MD, or study coordinator, Mandy Thesing, at (507) 284-3215.
Back
Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
