The ADVANCE Study
Research type
Research Study
Full title
The ADVANCE Study - A longitudinal Study of age-related comorbidities in people with hemophilia
IRAS ID
168397
Contact name
Robert Campbell Tait
Contact email
Sponsor organisation
Oslo University Hospital and Institute of Clinical Medicine University o
Duration of Study in the UK
9 years, 11 months, 31 days
Research summary
People with haemophilia (PWH) can suffer recurrent spontaneous and at times life-threatening bleeding episodes. Historically their life span was half that of the general population. With currently available coagulation factor replacement therapy PWH suffer infrequent bleeds and have a near normal life expectancy. Consequently PWH are now suffering the common illnesses seen in older age. Cardiovascular diseases (CVD: primarily coronary artery disease, atrial fibrillation and stroke) pose significant management challenges. Standard treatment for such conditions involves antithrombotic or anticoagulant medications which would significantly increase the bleeding risk if given to PWH. There is some evidence suggesting that PWH may be less prone to CVD, however it is also the case that typical CVD risk factors (smoking, hypertension, obesity, diabetes, hyperlipidaemia) are just as prevalent in PWH as the general population.
The aim of this 10-year prospective observational study is to follow-up 800 PWH, aged 40 years or older, recruited from up to 20 haemophilia centres across Europe, including 2 within the UK. Baseline data will allow estimation of their 10-year CVD risk (using established scoring tools: QRISK2 and SCORE). At annual follow-up any new illnesses, especially new diagnoses of CVD, and details of their management will be recorded. At study end we will compare the observed CVD rate with that expected at baseline and thus determine if indeed PWH are less prone to CVD. In addition, we will gather valuable information on how CVD might best be managed if it does occur in a PWH. We will also examine how other comorbidities in older age impact on the haemophilia condition, and how haemophilia may affect the management of these comorbidities. Ultimately the study outcomes should provide an evidence base to guide more effective and safe prevention and treatment strategies for the increasing number of older age PWH.REC name
South Central - Hampshire A Research Ethics Committee
REC reference
14/SC/1458
Date of REC Opinion
8 Jan 2015
REC opinion
Further Information Favourable Opinion