The Raynaud’s Association, along with Raynaud’s and Scleroderma organizations in the UK and Europe, helped recruit patients for a research study conducted in 2011, and results have just been published (yes, analysis can take a very long time!).
The objective of the study was to determine how well Raynaud’s patients can predict the occurrence and severity of their attacks. If sufferers’ predictive capability should be high, then new drug treatment options might be developed that would be taken before or after the onset of an attack. Current medications require ongoing usage and can be associated with significant side effects for some patients.
In addition to patients’ predictive capabilities, the study also explored their ability to prevent or control attacks (e.g., the perceived effectiveness of medications and preventative measures), and the overall impact of Raynaud’s on sufferers’ quality of life. Most studies we’ve seen cover the effectiveness of new drugs or try to correlate Raynaud’s to other health issues. Very few have explored the impact of Raynaud’s on quality of life, so we were glad to see this area included in the survey.
- Findings suggest that subjects with Raynaud’s Phenomenon have a limited ability to predict the occurrence and the severity of RP attacks
- Subjects reported a poor ability to prevent or control attacks
- Those currently taking medication for Raynaud’s generally found them tolerable, but seldom fully effective – indicating an unmet clinical need.
- The data confirms the significant burden of both primary and secondary Raynaud’s on quality of life (no news to us Frosties!)
It’s great to see the research community and pharmaceutical companies (this study was supported by Orion Pharma) taking a strong interest in Raynaud’s, treatment options and patient lifestyle issues. We hope that these findings lead to more questions and answers in the Raynaud’s community.