Vasculitis Foundation Canada

By Jon Stewart

Calling All TAK Patients!

Takayasu Arteritis (TAK), is a very rare form of large vessel vasculitis which lacks study research, and much more can, and needs to, be learned about this debilitating and sometimes lethal disease.  Using newer medical technology, and studying a large group of confirmed TAK patients, or those being evaluated for TAK, can be very helpful in revealing new approaches for diagnosis, disease monitoring, and perhaps ultimately improved treatment options. 

TAK patients will be interested to know that they are ALL welcome to visit and participate in two-three days of a new TAK research study, under the direction of Dr. Peter Grayson at the at National Institutes of Health in Bethesda, Maryland.

The first day is a clinical visit to formally review and sign the study consent form, review each patient’s disease history, and collect blood for clinic review and research.  The second day will be dedicated to comprehensive imaging tests including non-invasive angiography and positron emission tomography (PET scans).  The angiography studies are performed on a CT scanner or an MR scanner and do not involve invasive catheter procedures. Each patient can expect a consultation with Dr. Grayson, and/or his team, including a review of their lab results, and imaging tests.  A final report can be sent to either the patient, or the patient’s main doctor who is responsible for the patient’s ongoing TAK care.

Interested TAK patients should reach out to Elaine Novakovich at the contact information below, she will speak with each patient and can provide the study screening letter, and study consent, for review.  If the patient is comfortable with participating in this study they will be requested to forward some of their medical records which will be reviewed by the NIH team and prioritized in terms of urgency etc.  Each study patient will then be contacted to schedule an appointment visit at the NIH.  Study patients are required to sign the study consent at their first visit, and to pay for travel to and from the NIH, but the NIH can usually provide accommodation in the NIH lodge on campus.  

 TAK patients are encouraged to get involved and make a difference in advancing the understanding and knowledge of the many unknown aspects of TAK.

For compete information and to schedule an appointment please contact Elaine Novakovich as follows:

Elaine Novakovich, MS, RN
Nurse Specialist-Research
NIAMS/NIH
9000 Rockville Pike
Bldg. 10/10N318.2
Bethesda, MD 20892-2350
E-FAX: 301-480-3952
Phone: 301-451-1450
elaine.novakovich@nih.gov