RSDSA Sponsored Research 1992 to present RSDSA Sponsored Research - - PowerPoint PPT Presentation

rsdsa sponsored research 1992 to present rsdsa sponsored
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RSDSA Sponsored Research 1992 to present RSDSA Sponsored Research - - PowerPoint PPT Presentation

RSDSA Sponsored Research 1992 to present RSDSA Sponsored Research ~$1,960,000 Mechanisms of Disease Diagnosis & Classification Treatment Mechanism of Disease Early Efforts Model development Neural mechanism Adrenergic mechanisms More Recently


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RSDSA Sponsored Research 1992 to present

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RSDSA Sponsored Research ~$1,960,000

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Mechanisms of Disease Diagnosis & Classification Treatment

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Mechanism of Disease

Early Efforts

Model development Neural mechanism Adrenergic mechanisms

More Recently

Cytokines Autoimmune determinants Epigenetic determinants

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Diagnosis & Classification

Early Efforts

Hypersensitivity and visceral pain Population studies Pain perception Major histocompatibility The Budapest Criteria Salivary Oxidation products

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Diagnosis & Classification

More Recently

A Severity Score Defining “Recovery” A Core Data Set for clinical research Maternal mitrochondria

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Treatment

Early Efforts

Surgical sympathectomy Transcranial stimulation Nitroglycerine Evidence‐based clinical practice guidelines

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Treatment

More Recently

Low dose naltrexone Nitrous Oxide Induced sensory‐motor adaptation Ketamine infusion consensus guidelines

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“20” Year Study of the Long Term Health Effects of CRPS

Peter A. Moskovitz Denver, CO October 26, 2019

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Why?

Because people with CRPS feel that

their disease is about more than the pain.

Because other, “unrelated” health problems aren’t unrelated.

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How Come?

My theory: CRPS is an immune mediated disease.

Immune impairments have global effects.

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Neuroinflammation (NI)

A collection of diseases (this is just a few): Irritable Bowel Disease: NI of the intrinsic control of the gut Interstiticial Cystitis: NI of the bladder ALS and related degenerative diseases: NI of the motor apparatus Multiple Sclerosis: NI of the myelin apparatus (motor and sensory) Fibromyalgia: NI of the proprioceptive apparatus CRPS: NI of the nociceptive apparatus

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Questions

What is the incidence of adverse health events in people with CRPS over time? Are adverse health events related to the type or course of CRPS?

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Study Design

An Internet based survey An unselected sample of people with a diagnosis of CRPS A 9‐part questionnaire, completed annually for 20 years

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The Study Questionnaire

Demographics 1 CRPS history Family history Spread or Progression Remission 2 Pain Experience 3 McGill Pain Questionnaire

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4 Review of systems check‐list 5 Medications 6 Care utilization 7 Profile of mood states 8 Pain disability index 9 SF‐36

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Data Management

Professional Data Management Company Dedicated, secure research website Privacy assurance Safety protocols

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The Study Team

Peter Moskovitz, Washington, DC – Principle Investigator Kyoko Rice, Los Angeles, CA – Project Manager Jim Broatch, Milford, CT – Project Administrator Albert Farias, Los Angeles, CA ‐ Biostatistician

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The Glitch

There is no type nor sort of good idea that cannot be monetized to the benefit of the developer and for the exploitation of everyone else.

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Who Responded? Mostly whom you’d expect: White women

Does this imply a genetic predisposition to the disease – probably.

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1802 Respondents

53 194 329 521 480 148 77

Less than 18 18‐29 30‐39 40‐49 50‐59 60 and older No response

Age in Group

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Where did CRPS start? Lower extremity more than upper. Only 5% non‐extremity CRPS Right (dominant?) side slightly > than left.

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What “caused” it?

48% 39% 13%

CRPS Event by Injury vs Medical Procedure (n=1325)

Injury Surgery!

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Who first suggested CRPS?

Appropriately enough, 45% reported it was an Orthopaedic Surgeon.

3% reported that their own research suggested CRPS.

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Can CRPS spread to other sites? 87% reported that their CRPS spread.

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Does spread only occur early? 42% reported that their CRPS spread

  • ccurred more than a year after onset.
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Does our cohort represent the population of people with CRPS? Probably not. Our respondents appear to have a more severe type or sort of CRPS.

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Compared to “population‐based” cohorts of people with CRPS: Our respondents had: A lower incidence of remission more spread and reported less adequate pain control.

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But there’s some good news. . Although the experience of pain didn’t change much over time, respondents reported improved Quality‐of‐life (SF‐36).

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The Take‐Home. . Coping with CRPS and adapting to the experience of chronic pain is possible. The stuff you learn here and from RSDSA works.