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RIDE TO CONQUER CRPS 2008. ©PARC 2008. “ I couldn’t believe that a disease that I’d never heard of could do so much damage .”. Harry FL Pollett, MD FRCPC, Director Pain Clinic, Northside General Hospital, N Sydney, NS. PARC’S MISSION.

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i couldn t believe that a disease that i d never heard of could do so much damage

“I couldn’t believe that a disease that I’d never heard of could do so much damage.”

Harry FL Pollett, MD FRCPC, Director Pain Clinic, Northside General Hospital, N Sydney, NS

parc s mission
PARC’S MISSION
  • TO SUPPORT, EDUCATE AND INFORM PERSONS LIVING WITH CRPS/RSD, THEIR FAMILIES, FRIENDS, THE COMMUNITY, AND THE MEDICAL PROFESSIONALS TREATING CRPS/RSD ABOUT THE UTMOST IMPORTANCE OF EARLY DIAGNOSIS AND TREATMENT.
what is complex regional pain syndrome crps
WHAT IS COMPLEX REGIONAL PAIN SYNDROME (CRPS)?
  • painful neurological syndrome rated higher than cancer pain (McGill Pain Index)
  • 1 in 60 have lifetime risk
  • poorly understood, under-recognized syndrome, probable cause is nerve damage in C fibers (Oaklander MD PhD 2006)
  • early diagnosis is key, often diagnosed too late due to lack of medical education
  • patients often left with intractable pain
mc gill pain index
MC GILL PAIN INDEX
  • CRPS rated 42 and cancer pain rated 28 out of 50
worthy cause
WORTHY CAUSE
  • BRING greater awareness of disabling syndrome, earlier recognition through doctor education, health care professionals and community
  • THE EARLIER THE DIAGNOSIS, the greater the chance for a cure
  • SUPPORT research for better treatments and a cure, McGill University, Montreal
why crps
WHY CRPS?
  • chronic pain touches all Canadians (1 in 3)
  • no single successful treatment, needs to be caught early (30% diagnosed in 0-3 mo.)
  • desperately needed research for better treatments and a cure
  • better awareness of chronic pain syndromes (66% see 3 or more doctors before diagnosis)
why cycle
WHY CYCLE?
  • 2nd most popular sport in North America
  • solo cyclist in spotlight will bring importance and awareness to all Canadians
why mc gill university
WHY Mc GILL UNIVERSITY?
  • Canadian CRPS research lab at Mc Gill
  • distinguished senior research chair Dr Gary Bennett PhD, leading scientist in neuropathic pain and CRPS research
  • Mc Gill internationally known for excellent pain research
  • research will benefit all Canadians
ride details solo cyclist
RIDE DETAILS: SOLO CYCLIST
  • David L Shulman MD,CCFP,FCFP,DAAPM, Rothbart Pain Clinic, Toronto, Ontario
  • treats chronic pain/CRPS specialist
  • passionate about pain education for doctors, patient advocacy
  • avid cyclist dedicating time away from busy practice for this worthy cause
itinerary
ITINERARY
  • START DATE: July 19
  • PLACE: Marathon, Ontario (Canada’s centre)
  • STOP: CRPS research lab, McGill, Montreal
  • STOP: N Sydney NS: CRPS clinic
  • END: St. John’s NL
  • Estimated time: 3 weeks
critical success factors
CRITICAL SUCCESS FACTORS
  • Dr. Shulman’s Summer 2007 RIDE from BC to Marathon, Ontario
  • Dr Bennett, PhD, McGill: lab tour, highlights CRPS research
  • Dr Pollett, MD FRCPC : clinic tour, highlights CRPS treatment options
  • Track daily progress through PARC’s web site and Dr Shulman’s donor page
sponsor benefits
SPONSOR BENEFITS
  • use your brand in fundraising event
  • reinforce brand recognition
  • long term daily exposure of brand for 21 days through Ontario, Quebec, New Brunswick. Nova Scotia, and Newfoundland
proceeds of ride
PROCEEDS OF RIDE
  • to PARC’S educational programs for 2008-9 to educate doctors and public
  • to support ongoing research at McGill University into better treatments and a cure for CRPS.
ride to conquer crps
RIDE TO CONQUER CRPS
  • Brand new endeavour
  • FIRST KNOWN DOCTOR-CYCLIST FOR CRPS to travel in Canada
  • Speaks to importance of cause (see RSD CANADA Survey to follow)
rsd canada survey 2004 6
RSD CANADA SURVEY 2004-6

“Facts do not cease to exist because they are ignored”.

Aldous Huxley 1894-1963

rsd canada survey
RSD CANADA SURVEY
  • CRPS: Complex Regional Pain Syndrome aka RSD (Reflex Sympathetic Dystrophy, old name))
  • First Canadian survey online January 1, 2004-6
  • Huge gap of knowledge about CRPS/RSD in the medical community
  • Approximately 300 respondents
  • Astonishing results
rsdcanada survey results
RSDCANADA SURVEY RESULTS
  • Onset of CRPS to diagnosis
  • No. of doctors seen before diagnosis
  • Self-reported pain levels of CRPS patients
  • Rating own success
early diagnosis critical
EARLY DIAGNOSIS CRITICAL
  • Early diagnosis ( <3 mo.) for best prognosis
  • If left untreated, can lead to lifetime of intractable, chronic pain
  • 0-3 mo. HIGHEST recovery rate WITH treatment
  • 3-6 months after onset: 80-90% recovery rate
  • SURVEY results are much different
onset of crps to diagnosis
0-3 mo. =29.24%

3-6 mo. =19.27%

6 mo-1yr.= 10.96%

1yr-2yr =10.63%

2 yr-3yr=6.64%

3-5 yr = 3.31%

5 yr-20 yr = 3.65%

unknown = 14.28%

only 30% diagnosed early when success rate highest

1 in 2 (48.51%) diagnosed in < 6 mo.

3 out of 5 diagnosed within 1 year (59.47%)

1 in 2 or nearly 50% are not diagnosed early

1 in 4 (26.25%) are diagnosed after one year

ONSET OF CRPS TO DIAGNOSIS
no of doctors prior to diagnosis
1 doctor = 19.03%

2 doctors = 14.88%

3 doctors = 12.8 %

4 doctors = 14.53%

5 doctors = 13.84%

6 doctors = 8.65%

7 doctors = 0.69%

8 doctors - 0.35%

9 doctors = 2.42%

10 plus doctors = 8.3%

1 in 5 see one doctor

1 in 3 saw 2 or less doctors (33.91%)

2 in 3 patients saw 3 or more doctors (66.08%)

4 out of 5 see more than one doctor

WHY SEE MORE THAN ONE DOCTOR?

NO. OF DOCTORS PRIOR TO DIAGNOSIS
overall pain rating
OVERALL PAIN RATING
  • no one responded with 0 or 1 rating
  • 1 in 4 rate pain as a 10
  • 0-3 mild pain = 5.46%
  • 4-6 moderate pain = 22.82%
  • 7-10 severe pain = 70%
overall success rating
OVERALL SUCCESS RATING
  • approx. 1 in 3 rated success as 25% or less
  • about 2 in 3 rated success as 50% or less (POOR)
  • 1 in 6 rated success as FAIR - GOOD (50-75%)
  • 1 in 7 didn’t rate success, (likely would inflate very poor or poor numbers)
  • 1 in 20 rated overall success as VERY GOOD -EXCELLENT (75-100%)
survey conclusions
SURVEY CONCLUSIONS
  • MUST EDUCATE medical profession about early recognition of symptoms and PROPER diagnosis
  • MUST RECOGNIZE PAIN: pain is grossly under-treated; pain education
  • Low success ratings show lack of effective treatments for CRPS
conclusions
CONCLUSIONS
  • When not caught early, CRPS is difficult to treat
  • Make doctors aware of diagnostic criteria, early recognition
  • More research to find better treatments is desperately needed
slide31

“RSD IS NOT A WALK IN THE P.A.R.C.”

P.A.R.C.

PO BOX 21026

St. Catharines,

Ontario Canada

L2M 7X2

RSD HELP LINE: Mon-Thurs.

After 7 PM

OFFICE Tel: 905 934 0261

Web: www.rsdcanada.org

E-mail: [email protected]

PARC is a registered charity.

slide32

THANK YOU

Thanks for your attention and for supporting PARC

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