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 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? 2 nd 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 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 “Facts do not cease to exist because they are ignored”. Aldous Huxley

RSD CANADA SURVEY CRPS: Complex Regional Pain Syndrome aka RSD (Reflex Sympathetic Dystrophy, old name)) First Canadian survey online January 1, 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

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 % 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 SEEN PRIOR TO DIAGNOSIS OF CRPS

OVERALL PAIN RATING no one responded with 0 or 1 rating 1 in 4 rate pain as a 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

P.A.R.C. PO BOX St. Catharines, Ontario Canada L2M 7X2 RSD HELP LINE: Mon-Thurs. After 7 PM OFFICE Tel: Web: PARC is a registered charity. “RSD IS NOT A WALK IN THE P.A.R.C.”

Thanks for your attention and for supporting PARC THANK YOU