Three Stanford Studies Recruiting PDD, PSP, MSA, CBD or healthy controls

Two researchers at Stanford’s Movement Disorders Center are recruiting participants for three research studies who have PDD (rather than DLB), PSP, MSA, or CBD, or are healthy controls.

Dr. Kathleen Poston mentioned both of her studies are the October 2012 atypical parkinsonism symposium during the MSA break-out session, so that may not be new info to those who attended her session.  (And I know several in our group – both those with MSA and their healthy caregivers – have participated.  Thank you!)

You do NOT have to be a Stanford patient or Stanford family to
participate.  Details of the three studies follow.

Robin

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LOOKING FOR THOSE PDD (PARKINSON’S DISEASE DEMENTIA) AND HEALTHY CONTROLS

Development of multimodal imaging biomarkers for cognitive dysfunction in Parkinson’s disease

Principal Investigator:  Kathleen Poston, MD, MS.  This study is
funded by the Michael J. Fox Foundation for Parkinson’s Research.

Contact Info:  Sophie YorkWilliams, (650) 774-8688

We are recruiting:
1: Any persons with a diagnosis of Parkinson’s disease with all levels of memory ability.
2. Any healthy persons between the age of 45-95, who do not have PD, memory problems, or any other neurological disorder.

Study participants will receive at no cost:  brain imaging (MRI), a memory evaluation, a clinical evaluation, and genetic testing.

The purpose of this study:  To better understand brain networks and biological markers associated with memory changes in Parkinson’s disease, and to find ways of detecting these changes before memory problems develop.

LOOKING FOR THOSE WITH MSA, PSP, OR CBD

Early Differential Diagnosis of Parkinsonism with Metabolic Imaging and Pattern Analysis

Principal Investigator:  Kathleen Poston, MD, MS.  This study is
funded by the NIH.

Contact Info:  Hadar Keren-Gille, (650) 724-4131

We are recruiting:
1: People with an established clinical diagnosis of PD, MSA, PSP, or CBD
2: Any person with a parkinsonian diagnosis within the last 2 years, who is not on any levodopa (sinemet) or dopamine agonists
(ropinirole/Requipe or pramipexole/Mirapex).  Rasagiline (Azilect) or selegiline are OK.
3. Any person with REM Sleep Behavior Disorder (RBD), but no other neurological diagnosis.

Study participants will receive at no cost:  brain imaging (MRI and PET), a memory evaluation, and a clinical evaluation.

The purpose of this study:  To develop imaging markers that will more accurately diagnose parkinsonian disorders, such as Parkinson’s disease, Multiple System Atrophy, Progressive Supranuclear Palsy, and Corticobasal Degeneration.

LOOKING FOR THOSE WITH MSA OR PSP

Fine, limb and axial motor control study of people with MSA and PSP

Principal Investigator:  Helen Bronte-Stewart, MD, MSE

Contact Info:  Lauren A. Shreve, (650) 855-4656

We are recruiting:
1.  People with diagnosed MSA-P or -C and PSP, who can stand
unassisted in the off medication state.
2.  Healthy age-matched (older) control subjects.

Purpose:  We plan to compare fine and large motor kinematics with those from people with PD.

 

Therapy Even if No Improvement – Big Change to Medicare Rules

Back in October 2012, it was reported that a settlement had been proposed that would affect skilled nursing home stays as well as home health and home therapy services for those with Medicare.

This Monday, the New York Times reported that Congress also took action to allow exceptions to what Medicare pays for physical, occupational, and speech therapy.  Plus, the proposed settlement had been approved by the court; Medicare is now prohibited from denying patients coverage for “skilled nursing care, home health services or outpatient therapy because they had reached a ‘plateau,’ and their conditions were not improving.”

This will have an impact on Medicare beneficiaries who have PSP, CBD, MSA, and DLB diagnoses.

The Center for Medicare Advocacy (different from the Centers for Medicare & Medicaid Services), has a webpage devoted to “explaining how to challenge a denial of coverage that is based on the lack of improvement.”  See:

www.medicareadvocacy.org/take-action/self-help-packets-for-medicare-appeals/

And, the Center for Medicare Advocacy “advises beneficiaries to show a copy of the settlement — also available from the Web site — to your health care provider at your next physical therapy appointment if you are concerned about losing Medicare coverage.”

See a highlighted copy of the settlement:

www.medicareadvocacy.org/wp-content/uploads/2012/12/Settlement-Agreement-for-Web.pdf

Here’s a link to the NYT article:

newoldage.blogs.nytimes.com/2013/02/04/therapy-plateau-no-longer-ends-coverage

The New Old Age: Caring and Coping
Finances & Legalities 
Therapy Plateau No Longer Ends Coverage
New York Times
By Susan Jaffe
February 4, 2013, 7:49 am

Robin

Easy Trick to Distinguish PSP from PD

Tim Rittman, a clinical research fellow in neurology in the UK, recently posted to The PSP Association’s blog about his recent paper on using cognitive testing to differentiate Parkinson’s Disease (PD) and progressive supranuclear palsy (PSP).  Here’s a link to his blog post:

www.pspassociation.org.uk/2013/01/easy-trick-to-distinguish-psp-from-parkinsons-disease/#more-6112

The full post is copied below.

Robin

——————–

Tim Rittman
Post to The PSP Association’s Blog

I’m pleased the JNNP have published my paper on cognitive testing in Parkinson’s disease (PD) and two rarer but important diseases that can be confused, Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD), though a little surprised no one had done the study before now. The headlines are:

  • a short test of verbal fluency distinguishes extremely well between Parkinson’s disease and Progressive Supranuclear Palsy
  • it’s not so useful for distinguishing Parkinson’s disease from Corticobasal Degeneration, or between Progressive Supranuclear Palsy and Corticobasal Degeneration
  • the ACE-R test changes over time in Parkinson’s and Corticobasal Degeneration, but not so much in Progressive Supranuclear Palsy

If you want more details, either read the paper or get in touch! Even though it’s not the main chunk of my thesis, I enjoyed writing this paper. It gets to the heart of a challenging clinical problem (and deals with the fun part of being a neurologist!), that of making the correct diagnosis in similar diseases. It uses relatively simple tools, in the Revised Addenbrooke’s Cognitive Examination and verbal fluency scores, so should apply to most clinic or hospital situations.

Parkinson’s can be a tough disease to deal with, but usually responds well to treatment for many years. Giving a diagnosis of PSP or CBD has much great implications for patients and relatives in terms of the lack or treatment response, shorter prognosis, and challenging cognitive and motor symptoms.

To those who know PSP and CBD well, there is nothing particularly surprising in our results, although the high significance levels and good performance of the tests will hopefully give some confidence in existing knowledge. My hope is this will raise awareness among those less familiar with the disorders, and enable earlier recognition of PSP and CBD. JNNP has a wide readership among clinicians, so I’m really pleased they’ve published it. I may be optimistic, but if anyone finds the paper useful because they’re struggling with differential diagnosis, then I’d love to hear from you!

Looking at MRIs of autopsy-confirmed PSP and MSA

This is a well-done study out of Queen Square Brain Bank in London.  Many progressive supranuclear palsy (PSP) and multiple system atrophy (MSA) families have donated loved one’s brains to this brain bank, and a great team has been doing research there for a decade or more.

This latest research takes the MRIs from 22 people with autopsy-confirmed PSP, 13 with autopsy-confirmed MSA, 7 with autopsy-confirmed Parkinson’s Disease (PD), 6 with autopsy-confirmed corticobasal degeneration (CBD), and 9 controls.  People, without knowledge of the clinical diagnoses or post-mortem diagnoses, were shown MRIs.  Seventy-two percent of the PSP cases were correctly assessed.  Seventy-six percent of the MSA cases were correctly assessed.  “No PSP case was misclassified as MSA or vice versa.”  The authors note this is about as good as clinical diagnosis.

The authors “suggest a need for imaging techniques sensitive to microstructural abnormalities without regional atrophy.”

When I get a chance, I’ll read the full study….  Or one of you can!  The abstract is copied below.

Robin

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Movement Disorders. 2012 Apr 4.  [Epub ahead of print]

Conventional magnetic resonance imaging in confirmed progressive supranuclear palsy and multiple system atrophy.

Massey LA, Micallef C, Paviour DC, O’Sullivan SS, Ling H, Williams DR, Kallis C, Holton JL, Revesz T, Burn DJ, Yousry T, Lees AJ, Fox NC, Jäger HR.
Sara Koe PSP Research Centre, UCL Institute of Neurology, University College London, London, United Kingdom; Queen Square Brain Bank for Neurological Disorders, UCL Institute of Neurology, University College London, London, United Kingdom; Reta Lila Weston Institute of Neurological Studies, UCL Institute of Neurology, University College London, London, United Kingdom. [email protected].

Abstract
Conventional magnetic resonance imaging (cMRI) is often used to aid the diagnosis of progressive supranuclear palsy (PSP) and multiple system atrophy (MSA), but its ability to predict the histopathological diagnosis has not been systematically studied.

cMRI from 48 neuropathologically confirmed cases, including PSP (n = 22), MSA (n = 13), Parkinson’s disease (PD) (n = 7), and corticobasal degeneration (n = 6), and controls (n = 9) were assessed blinded to clinical details and systematically rated for reported abnormalities. Clinical diagnosis and macroscopic postmortem findings were retrospectively assessed.

Radiological assessment of MRI was correct in 16 of 22 (72.7%) PSP cases and 10 of 13 (76.9%) MSA cases with substantial interrater agreement (Cohen’s kappa 0.708; P < .001); no PSP case was misclassified as MSA or vice versa.

MRI was less sensitive but more specific than clinical diagnosis in PSP and both more sensitive and specific than clinical diagnosis in MSA.

The “hummingbird” and “morning glory” signs were highly specific for PSP, and “the middle cerebellar peduncle sign” and “hot cross bun” for MSA, but sensitivity was lower (up to 68.4%) and characteristic findings may not be present even at autopsy.

cMRI, clinical diagnosis, and macroscopic examination at postmortem have similar sensitivity and specificity in predicting a neuropathological diagnosis. We have validated specific radiological signs in pathologically confirmed PSP and MSA. However, the low sensitivity of these and macroscopic findings at autopsy suggest a need for imaging techniques sensitive to microstructural abnormalities without regional atrophy.

Copyright © 2012 Movement Disorder Society.

PubMed ID#:  22488922  (see pubmed.gov for this abstract only)

Autonomic testing to differentiate MSA and PD

This is a Mayo Rochester study of 10 people with a clinical diagnosis of Parkinson’s Disease (including the presence of all three cardinal features — resting tremor, bradykinesia, and rigidity) and 9 people with a clinical diagnosis of multiple system atrophy (including orthostatic hypotension or urinary incontinence, parkinsonism responding poorly to levodopa or cerebellar ataxia).

The authors note that specific autonomic tests are not part of the diagnostic criteria for multiple system atrophy (MSA).

The authors state:

“Our results are in keeping with previous data showing more widespread anhidrosis on TST [thermoregulatory sweat test] among MSA patients, and that this degree of anhidrosis distinguishes this disorder from PD. Similarly overall autonomic dysfunction, as indicated by the CASS score, was more severe and widespread in the MSA group versus the PD group supporting similar data from previous studies. These findings continue to support our previous assertions that the severity and distribution of autonomic dysfunction in MSA patients are useful clinical additions in distinguishing this disorder from PD.”

The authors conclude that the “thermoregulatory sweat test provides the best distinction between MSA and PD.” They also like the autonomic reflex screen (to generate the CASS score).

The authors also note that this study, in contrast to previous studies, found that I123 MIBG myocardial scintigraphy did not differentiate PD from MSA. However, they believe that MIBG may be a useful part of the testing program.

The abstract is below.

Robin

Journal of the Neurological Sciences. 2012 Mar 13. [Epub ahead of print]

The role of autonomic testing in the differentiation of Parkinson’s disease from multiple system atrophy.

Kimpinski K, Iodice V, Burton DD, Camilleri M, Mullan BP, Lipp A, Sandroni P, Gehrking TL, Sletten DM, Ahlskog JE, Fealey RD, Singer W, Low PA.
Department of Clinical Neurological Sciences, London Health Sciences Centre, University of Western Ontario, London, ON, Canada.

Abstract
Differentiation of idiopathic Parkinson’s disease (PD) from multiple system atrophy (MSA) can be difficult. Methods devised to help distinguish the two disorders include standardized autonomic testing and cardiac imaging with iodine-123 meta-iodobenzylguanidine myocardial scintigraphy.

MSA patients had more severe adrenergic and overall autonomic dysfunction when compared to control and PD patients.

Area of anhidrosis on thermoregulatory sweat test was greater in MSA (67.4±12.42, p<0.001) versus PD patients (area of anhidrosis, 1.7±2.96).

Postganglionic cardiac sympathetic innervation (iodine-123 meta-iodobenzylguanidine) expressed as heart to mediastinal ratio was significantly lower in Parkinson’s disease patients (1.4±0.40, p=0.025) compared to controls (2.0±0.29), but not in multiple system atrophy (2.0±0.76).

These findings indicate that autonomic dysfunction is generalized and predominantly preganglionic in multiple system atrophy, and postganglionic in Parkinson’s disease.

In our hands the thermoregulatory sweat test provides the best distinction between MSA and PD. However further confirmatory studies using larger patient numbers are required. Currently a combination of clinical judgment and autonomic testing is recommended to help differentiate MSA and PD.

PubMed ID#: 22421352 (see pubmed.gov for this abstract only)