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Quantifying Your Parkinson’s
          with a Wii
     QuantifiedSelf Paris May 22, 2012




   2012 FundMyMedicalResearch.org – http://twitter.com/FundMyMR
                    CC BY-NC-ND
Parkinson’s Disease
A brief introduction
What is Parkinson’s Disease?
 Neurological degeneration of substantia nigra’s cells
    Cells producing dopamine
    Disease characterized by tremors, bradykinesia (slowness),
       rigidity

                   Diagnostic is currently only clinical (observation)
                      DaTScan can spot dopaminergic deficits and help differentiate with other
                       disorders but is not an official base for a diagnostic
                      Only evaluation by a neurologist is recognized for diagnosis

 Looking for biomarkers – PPMI Michael J Fox Foundation’s
   initiative
    DatScan measures?
    Cerebral Spinal Fluid analysis?
    Blood levels?


                     2012 FundMyMedicalResearch.org – http://twitter.com/FundMyMR
                                      CC BY-NC-ND
Causes of Parkinson’s
 We don’t know!

 But we know that
   Dopamine producing cells in the Substantia Nigra (SN)
    degenerate
   Basal ganglia cells do not receive enough dopamine and can’t
    perform their complex job for motor, and mood, processing
    loops
   Motor alterations of movements is more and more pronounced,
    “potentially” until a bed-ridden stage
   “Usually” leading to a constant degradation in Quality of Life

          2012 FundMyMedicalResearch.org – http://twitter.com/FundMyMR
                           CC BY-NC-ND
What’s the treatment?
 Compensate the loss of dopamine by supplying more levodopa,
  a precursor that is transformed in dopamine
  by the Substantia Nigra cells
    Though, we can’t monitor directly the number of SN cells
    We could see, thanks to a heavy procedure (DaTScan),
     the uptake of dopamine in basal ganglia improving

    But mainly, we can see the improvement in motor condition
       Which is the basis for an official diagnosis

 Exercise is also shown to be important (as potent as dopamine agonists,
  another drug class)
    “Use it or loose it” situation
    Probably improves uptake of dopamine
    Put neuroplasticity in motion

               2012 FundMyMedicalResearch.org – http://twitter.com/FundMyMR
                                CC BY-NC-ND
The situation is
 Motor symptoms are the only easily
  observable impact of the disease
   Depression is difficult to evaluate, and can be made worse by
    motor problems
 Every Parkinson’s patient is different
   Mechanisms are extremely complex and idiopathies probably
    very different
   Symptoms vary greatly among patients
 Levodopa has a short plasma half-life cycle (1 hour)
   Should be taken several times a day
   Proper doses throughout the day and adherence
    to schedule are critical
           2012 FundMyMedicalResearch.org – http://twitter.com/FundMyMR
                            CC BY-NC-ND
Why the Wii (or the Kinect, or the
iPhone,..) can help?
 Helps you exercising
 Monitors your movements
 Provides measures or indexes that you can
  track (e.g. Wii-Fit age)

 Several studies are built on using the Wii to create physical
  exercises, and monitor their impact
 Wii has been an early (objective) indicator
  for a UK lady prior to her diagnosis
 Wii could serve to quantify objective measures among a large
  set of patients, and control group

           2012 FundMyMedicalResearch.org – http://twitter.com/FundMyMR
                            CC BY-NC-ND
Sara Riggare
A woman with Parkinson’s Disease. Not patient but im-patient
2012 Sara Riggare – http://twitter.com/SaraRiggare
          CC BY-NC-ND    2012 Sara Riggare – http://twitter.com/SaraRiggare CC BY-NC-ND
2012 Sara Riggare – http://twitter.com/SaraRiggare
          CC BY-NC-ND
2012 Sara Riggare – http://twitter.com/SaraRiggare
          CC BY-NC-ND
2012 Sara Riggare – http://twitter.com/SaraRiggare
          CC BY-NC-ND
2012 Sara Riggare – http://twitter.com/SaraRiggare
2012 Sara Riggare – http://twitter.com/SaraRiggare CC BY-NC-ND
                                                    CC BY-NC-ND
When crowdfunding meets
quantified-self
Clinical trials that patients consider important, at fractions of the
cost
Crowdfunding clinical trials
 Using un-expensive material to monitor
  patient and control groups
 Opening the scope of hypotheses to be quickly tested
   Exercise, dietary regimens
   Existence of sub-types for the disease
 Big Data coming to medical research
          23AndMe gathered genetic material from
           6500+ people with Parkinson’s, leading to
           new correlations between certain genes and the disease
          We could create a database of daily-living measures for
           symptoms and impact of drugs (are there compounds
           slowing down progression?)

          2012 FundMyMedicalResearch.org – http://twitter.com/FundMyMR
                           CC BY-NC-ND
If you’re interested in a crowdfunding
challenge for quantified-self trials

Let’s emulate #SciFund Challenge success. If you’re interested in
seeing a similar Challenge for #quantifiedself #medicaltrials:

 Show this presentation around
 Contact me at fbaud@p2pventure.org




          2012 FundMyMedicalResearch.org – http://twitter.com/FundMyMR
                           CC BY-NC-ND

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Quantifying Parkinson's Disease with a Wii

  • 1. Quantifying Your Parkinson’s with a Wii QuantifiedSelf Paris May 22, 2012 2012 FundMyMedicalResearch.org – http://twitter.com/FundMyMR CC BY-NC-ND
  • 3. What is Parkinson’s Disease?  Neurological degeneration of substantia nigra’s cells  Cells producing dopamine  Disease characterized by tremors, bradykinesia (slowness), rigidity  Diagnostic is currently only clinical (observation)  DaTScan can spot dopaminergic deficits and help differentiate with other disorders but is not an official base for a diagnostic  Only evaluation by a neurologist is recognized for diagnosis  Looking for biomarkers – PPMI Michael J Fox Foundation’s initiative  DatScan measures?  Cerebral Spinal Fluid analysis?  Blood levels? 2012 FundMyMedicalResearch.org – http://twitter.com/FundMyMR CC BY-NC-ND
  • 4. Causes of Parkinson’s  We don’t know!  But we know that  Dopamine producing cells in the Substantia Nigra (SN) degenerate  Basal ganglia cells do not receive enough dopamine and can’t perform their complex job for motor, and mood, processing loops  Motor alterations of movements is more and more pronounced, “potentially” until a bed-ridden stage  “Usually” leading to a constant degradation in Quality of Life 2012 FundMyMedicalResearch.org – http://twitter.com/FundMyMR CC BY-NC-ND
  • 5. What’s the treatment?  Compensate the loss of dopamine by supplying more levodopa, a precursor that is transformed in dopamine by the Substantia Nigra cells  Though, we can’t monitor directly the number of SN cells  We could see, thanks to a heavy procedure (DaTScan), the uptake of dopamine in basal ganglia improving  But mainly, we can see the improvement in motor condition  Which is the basis for an official diagnosis  Exercise is also shown to be important (as potent as dopamine agonists, another drug class)  “Use it or loose it” situation  Probably improves uptake of dopamine  Put neuroplasticity in motion 2012 FundMyMedicalResearch.org – http://twitter.com/FundMyMR CC BY-NC-ND
  • 6. The situation is  Motor symptoms are the only easily observable impact of the disease  Depression is difficult to evaluate, and can be made worse by motor problems  Every Parkinson’s patient is different  Mechanisms are extremely complex and idiopathies probably very different  Symptoms vary greatly among patients  Levodopa has a short plasma half-life cycle (1 hour)  Should be taken several times a day  Proper doses throughout the day and adherence to schedule are critical 2012 FundMyMedicalResearch.org – http://twitter.com/FundMyMR CC BY-NC-ND
  • 7. Why the Wii (or the Kinect, or the iPhone,..) can help?  Helps you exercising  Monitors your movements  Provides measures or indexes that you can track (e.g. Wii-Fit age)  Several studies are built on using the Wii to create physical exercises, and monitor their impact  Wii has been an early (objective) indicator for a UK lady prior to her diagnosis  Wii could serve to quantify objective measures among a large set of patients, and control group 2012 FundMyMedicalResearch.org – http://twitter.com/FundMyMR CC BY-NC-ND
  • 8. Sara Riggare A woman with Parkinson’s Disease. Not patient but im-patient
  • 9. 2012 Sara Riggare – http://twitter.com/SaraRiggare CC BY-NC-ND 2012 Sara Riggare – http://twitter.com/SaraRiggare CC BY-NC-ND
  • 10. 2012 Sara Riggare – http://twitter.com/SaraRiggare CC BY-NC-ND
  • 11. 2012 Sara Riggare – http://twitter.com/SaraRiggare CC BY-NC-ND
  • 12. 2012 Sara Riggare – http://twitter.com/SaraRiggare CC BY-NC-ND
  • 13. 2012 Sara Riggare – http://twitter.com/SaraRiggare 2012 Sara Riggare – http://twitter.com/SaraRiggare CC BY-NC-ND CC BY-NC-ND
  • 14. When crowdfunding meets quantified-self Clinical trials that patients consider important, at fractions of the cost
  • 15. Crowdfunding clinical trials  Using un-expensive material to monitor patient and control groups  Opening the scope of hypotheses to be quickly tested  Exercise, dietary regimens  Existence of sub-types for the disease  Big Data coming to medical research  23AndMe gathered genetic material from 6500+ people with Parkinson’s, leading to new correlations between certain genes and the disease  We could create a database of daily-living measures for symptoms and impact of drugs (are there compounds slowing down progression?) 2012 FundMyMedicalResearch.org – http://twitter.com/FundMyMR CC BY-NC-ND
  • 16. If you’re interested in a crowdfunding challenge for quantified-self trials Let’s emulate #SciFund Challenge success. If you’re interested in seeing a similar Challenge for #quantifiedself #medicaltrials:  Show this presentation around  Contact me at fbaud@p2pventure.org 2012 FundMyMedicalResearch.org – http://twitter.com/FundMyMR CC BY-NC-ND