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RIDE TO CONQUER CRPS 2008

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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RIDE TO CONQUER CRPS 2008

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  1. RIDE TO CONQUER CRPS2008 ©PARC 2008

  2. “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

  3. 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.

  4. 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

  5. MC GILL PAIN INDEX • CRPS rated 42 and cancer pain rated 28 out of 50

  6. 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

  7. 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)

  8. WHY CYCLE? • 2nd most popular sport in North America • solo cyclist in spotlight will bring importance and awareness to all Canadians

  9. 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

  10. 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

  11. 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

  12. 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

  13. 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

  14. 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.

  15. 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)

  16. RSD CANADA SURVEY 2004-6 “Facts do not cease to exist because they are ignored”. Aldous Huxley 1894-1963

  17. 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

  18. RSDCANADA SURVEY RESULTS • Onset of CRPS to diagnosis • No. of doctors seen before diagnosis • Self-reported pain levels of CRPS patients • Rating own success

  19. 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

  20. 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

  21. ONSET OF CRPS TO DIAGNOSIS

  22. 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

  23. NO. OF DOCTORS SEEN PRIOR TO DIAGNOSIS OF CRPS

  24. 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%

  25. PAIN RATING SCALE 0-10

  26. 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%)

  27. OVERALL SUCCESS RATING(%)

  28. WHAT IS THE CURRENT STATUS OF YOUR CRPS?

  29. 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

  30. 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

  31. “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: rsdinfo@becon.org PARC is a registered charity.

  32. THANK YOU Thanks for your attention and for supporting PARC

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