NEW DIAGNOSTIC CRITERIA & PROTOCOLS NEEDED
CRPS demands more rigorous diagnostic criteria, tools and protocols in order to diagnose and treat patients while there is a favorable outcome. CRPS is currently only treatable during Stage one of the syndrome. Early agressive treatment can prevent a lifetime of suffering. Currently it is assumed that more than 60% of patients living with CRPS are undiagnosed. Most patients are diagnosed when the CRPS has progressed to later stages.
To increase early diagnosis and prevent chronic CRPS a more rigorous diagnostic protocol is needed. CRPS is a clinical diagnosis deserving of anaysis of symptoms over a period of time and with appropriate diagnostic tools. The Budapest Criteria implemented with a simple 10 minute neurologic exam are leaving most patients suffering with CRPS undiagnosed until it spreads and worsens. The CURE CRPS Foundation is in the process of developing a new set of protocols both utilizing the Budapest Criteria as well as making suggestions on possible improvements to increase specificity withing a rigorous scientific framework.
The Budapest Criteria was focused on reducing rates of diagnosis by more than 60% assuming most patients presenting with symptoms were malingerers and the chief aim of the study was to reduce medical spending. This focus has resulted in a net decrease in diagnosed cases and a net increase in gross medical spending due to patients needing lifelong palliative care because they were not diagnosed when the disease could be treated.
Cure CRPS Foundation, Inc. is dedicated to helping CRPS patients receive to medical care during the earliest stages of the disease to prevent chronic longterm CRPS.
COMPREHENSIVE MULTI-MODAL Multi-Disciplinary RESEARCH
CURE CRPS Foundation, Inc. funds retrospective studies from all types of clinicians working with CRPS patients from around the world. Longitudinal studies following patient popultions over time is absolutely necessary to gauge success of treatment and to developing a true understanding the net impact of treatment protocols.
Science in this age is currently not been placing adequate focus on case-based study or anecdotal reports. These studies are critical to any rare disease. Most clinicians working with CRPS patients do not have adequate time to devote to publishing their clinical findings in part due to the time intensive changes imposed on all clinicians from the Affordable Healthcare Act.
The Cure CRPS Foundation, INC. is reaching out to clinicians around the world to help physicians publish findings in order to share their clinical knowledge.
The Development taskforce is alse leveraging patient perspective to help guide benchmarks of success. Cure CRPS Foundation hosts focus groups through the CURE CRPS Foundation Patients seeking a Cure social Networking platforms. who have been essentially manag
Because most physcians have no training or knowledge of CRPS nor the pathophysiology of chronic pain, it is important for patients to share their knoweldge in self-care in a meaningful way to elucudate where to direct scientific study and advancement.
CURE CRPS Medical Advisory Board authors recommendations, reviews, retrospective studies and meta-data studies for peer review and publication.