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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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RIDE TO CONQUER CRPS 2008

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RIDE TO CONQUER CRPS2008

©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

  • 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)?

  • 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

  • CRPS rated 42 and cancer pain rated 28 out of 50


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?

  • 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?

  • 2nd most popular sport in North America

  • solo cyclist in spotlight will bring importance and awareness to all Canadians


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

  • 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

  • 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

  • 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

  • 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

  • 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

  • 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

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

Aldous Huxley 1894-1963


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

  • 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 ( <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


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


ONSET OF CRPS 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


NO. OF DOCTORS SEEN PRIOR TO DIAGNOSIS OF CRPS


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%


PAIN RATING SCALE 0-10


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%)


OVERALL SUCCESS RATING(%)


WHAT IS THE CURRENT STATUS OF YOUR CRPS?


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

  • 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


“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.


THANK YOU

Thanks for your attention and for supporting PARC


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