Takayasu Registry



Description:

 

TAKAYASU ARTERITIS REGISTRY

Takayasu arteritis (TAK) is a rare, chronic granulomatous large-vessel arteritis that predominantly affects aorta and its major branches which may lead to segmental stenosis, occlusion, dilatation and/or aneurysm formation. TAK generally has a relapsing-remitting course leading to prolonged periods of seemingly clinically ‘inactive” disease during which arterial damage can still progress. Relapses are frequent in TAK during the disease course. Although recent data is showing better prognosis in recent studies, there is still a significant delay in the diagnosis of TAK. Both morbidity and mortality rate is still high due to new and severe manifestations after diagnosis. However, there is only retrospective and very limited data for the long term prognosis of TAK.



Instructions:

In this registry, we plan to include both newly diagnosed patients (within last 24 months) and already diagnosed TAK patients for assessment of disease course and long term prognosis  with prospective follow-up.  We also tranfered the data of our multicentered TAK inception cohort previously settled for long term by Turkish Takayasu Arteritis Study Group.

We plan to include TAK patients meeting ACR 1990 Criteria, and at least annually follow-up visits are required for each patient. The registry will be open to  international participation to be able to make a comparison across different countries.



Project Admins:

  • Fatma Alibaz-Oner
  • HANER DIRESKENELI


Project start - end date: 11/01/2021 - 11/01/2026