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FEATURE | BROATCH
RSDSA: Expanding Research,
Education, and Awareness of CRPS
BY JAMES W. BROATCH, MSW, RSDSA EXECUTIVE DIRECTOR
SCIENTISTS AND CLINICIANS ARE STILL BAFFLED by this
little-known, poorly understood collection of signs and
symptoms of CRPS—what causes it, why it develops
in one person and not in another with the same injury,
why it occurs in more females than males, and why
children and teens with this syndrome generally get
better while most adults (80 percent in one prospective
study) cannot resume prior activities (1).
The Reflex Sympathetic Dystrophy Syndrome Association
(RSDSA) deals with issues like these every day. Founded in
1984 to raise money for research, over the years, our mission
has broadened to include awareness, education, patient support,
legislative issues, and the creation of a CRPS patient
database. Based in Milford, Connecticut, RSDSA has two fulltime
employees and is guided by a talented 10-member board
of directors (four of whom have CRPS). Our Scientific Advisory
Committee is led by R. Norman Harden, MD, and
Srinivasa N. Raja, MD, and is comprised of some of the key
thought leaders on CRPS who serve as consults on medical,
treatment, and research issues. RSDSA has grown into a
national, nonprofit organization with an annual revenue is
over $600,000, 90 percent of which is spent on research and
educational programming.
Research
RSDSA is committed to encouraging research to discover the
cause(s) and cure(s) of CRPS. Why? Because medical professionals
and the public are still largely unaware of this intensely
painful and potentially debilitating syndrome. For example, a
1999 epidemiology study published in PAIN reported that the
mean number of different physicians who evaluated a CRPS
patient prior to being seen at a pain center was 4.8 (2). Then in
2005, an Internet-based survey of 1,362 people with CRPS
(conducted by Johns Hopkins School of Medicine and funded
by RSDSA) found that 56 percent of the respondents saw more
than four physicians prior to being diagnosed with CRPS-not
much of an improvement!
Also, the reality is: you can’t cure what you don’t understand!
Peter Moskowitz, MD, a member of the RSDSA board of
directors, explains, “Science helps us learn new things, and there is
much we want to know about CRPS. The best science not only
helps us know about difficult subjects—and CRPS is a very difficult
subject—it also tells us how we know what we know and
informs our understanding of the disease process and its treatment.”
It is for these reasons that we fund at least two research
grants (up to $50,000 each) every year. Since 1992, RSDSA has
funded $732,665 in fellowships and research grants. Recent
RSDSA-funded grants include:
❥ Treatment of Complex Regional Pain Syndrome Type I by
Nitroglycerine, A Web-Based Epidemiological Survey of CRPS-I;
❥ Identification of CRPS Subtypes and Effective Treatments;
❥ Changes in CSF Cytokine levels in Reflex Sympathetic
Dystrophy; Validation of Revised Diagnostic Criteria
for CRPS/RSD; and,
❥ Noninvasive Investigation of Human Brain Mechanisms
Associated with the Development and Treatment of RSD.
An Outcome of RSDSA Research Funding
In 2004, we funded a study called Development of a rat model
of CRPS-I based on partial injury to nociceptive axons. The
results of this study prompted further research, which evolved
into a paper written by Anne Louise Oaklander, MD, PhD,
called Evidence of focal small-fiber axonal degeneration in complex
regional pain syndrome-I (reflex sympathetic dystrophy). This
study will be published in Pain and proves that: “CRPS-I now
has an identified cause takes it out of the realm of so-called
‘psychosomatic illness.’ (3)”
Detailed application guidelines for funding can be
found on our website at: www.rsds.org
Education and Awareness
In order to encourage accurate diagnosis and appropriate treatment,
RSDSA has developed informative educational brochures
with the assistance of our Scientific Advisory Committee. One
of the most widely distributed is a screening tool for medical
professionals—a laminated, two-sided, wallet-sized card that lists
the signs and symptoms of CRPS Type I on one side and provides
a pain rating scale on the other. We mailed the card along
with an informative cover letter to members of the American
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