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

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

0.00%

5.00%

10.00%

15.00%

< 1 MO 1 MO 2 MO 3 MO 4 MO5 MO 6 MO 7 MO 8 MO 9 MO10 MO 11 MO 1YR-2YR 2-3 YR 3-5 YR5 YR plus UNKNOWN

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 SEEN PRIOR TO DIAGNOSIS OF CRPS

0.00%

5.00%

10.00%

15.00%

20.00%

1 2 3 4 5 6 7 8 9 10+ DK

19.03%

14.88%

12.80%

14.53%

13.84%

8.65%

0.69%

0.35%

2.42%

8.30%

4.50%

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

0.00%

5.00%

10.00%

15.00%

20.00%

25.00%

mild moderate severe

0

1

2

3

4

5

6

7

8

9

10

DK

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(%)

0.00%5.00%

10.00%15.00%20.00%25.00%30.00%35.00%40.00%

very

poor

poor

fair

good/e

x. NR

responses(%)

34%

29.79%

17.63%

5.17%

NR

WHAT IS THE CURRENT STATUS OF YOUR CRPS?

0.00%

10.00%

20.00%

30.00%

40.00%

50.00%

60.00%

70.00%

WORSE

BETTER

SAME

Unknown

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 21026St. Catharines,Ontario CanadaL2M 7X2RSD HELP LINE: Mon-Thurs.After 7 PMOFFICE Tel: 905 934 0261Web: www.rsdcanada.org E-mail: rsdinfo@becon.orgPARC 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