The Haemophilia Osteoporosis Registry (THOR)

Haemophilia is a genetic condition where there is a deficiency in a blood clotting factor, and mostly affects men. The severity of haemophilia is determined by the extent of clotting factor deficiency, ranging from mild, moderate to severe.

Treatment for haemophilia has improved immensely over the past 30 years and has increased the life expectancy in haemophilia patients. Fracture rates are higher in patients with haemophilia, with disease severity affecting fracture risk. We don’t know why haemophilia patients are at a higher risk of fractures or if bone loss begins earlier than in the general population.

This research study will be the first to focus on bone and muscle in patients with haemophilia A to understand why fracture rates are higher.

Benefits to you

  • Free health check-up that includes blood and physical performance tests, bone density and body composition scans
  • Learning about musculoskeletal health

Commitment

  • blood tests (we will provide a light breakfast)
  • questionnaires
  • muscle strength tests
  • bone density and body composition scans

Eligibility

  • Moderate or severe haemophilia A OR control (generally healthy)
  • Male
  • Aged >18 years
  • Weigh less than 160 kg
  • At least one side of the body free from any metal or other material that may interfere with imaging
  • no existing medical conditions that may deem participation unsafe or inappropriate (e.g. inability to remain still due to a tremor)

For further enquiries please contact med-bmrg@monash.edu or 0492 467 012.