Caution against unproven stem cell therapies (Parkinson’s, MSA, etc)

This may be of interest to everyone in our support group, regardless of diagnosis.

The Movement Disorder Society (MDS) issued a position paper this week on the use of stem cell therapies for Parkinson’s Disease (PD).  The lay summary of the position paper concludes as follows:

“[Until] such treatments are proven to be of benefit and published in recognized scientific journals that objectively scrutinize their procedures, the Society encourages patients to participate only in cell therapy studies that are part of a research program affiliated with a recognized academic institution.”

A section of the paper was about stem cell treatment for “parkinsonian syndromes.” This term applies to PD, MSA, PSP, CBD, and DLB.  That section reads:

“Present publicly offered stem cell therapies for clinical use
There are several organizations world-wide which offer stem cell therapy for clinical application in patients. There is no detailed scientific information available on the outcome of these therapies. In a recent case series, data from patients with parkinsonism who underwent these procedures were collected retrospectively(31). … The report describes 17 patients with Parkinsonian syndromes who received intrathecal application of autologous unsorted bone marrow cells. There were no changes in motor function, activities of daily living, global clinical impression or antiparkinsonian medication after a median observation period of 10 months. Two patients (12%) reported a worsening of Parkinsonian symptoms, but the intervention was otherwise safe and well tolerated. Intrathecal application of autologous bone marrow cells in such uncontrolled conditions did not produce clinical benefit in these patients.”

I’ve copied the abstract to reference #31 below.

Of the 17 patients studied, 7 have a clinical diagnosis of PD, 7 have a clinical diagnosis of MSA, and 3 have other clinical diagnoses.  This break-down fits with my experience as well:  I’ve heard more about MSA patients trying out the various stem cell treatments available around the world than I’ve heard about those with PSP, CBD, or DLB diagnoses.  The reason may be that those with MSA are younger than those with the other diagnoses, on average, so there may be more desperation on the part of the patient and family.

We have had at least one person with MSA in our local support group who went to China for stem cell treatment.  And the medical advisor to our support group, Dr. Neng Huang, also reports that he knows of someone who went to China for stem cell treatment.  Neither patient seemed to have benefitted from the treatment.

I haven’t read the full article but presumably the 7 MSA patients don’t include those who participated in a South Korean study of autologous bone marrow cells (since clinical data was available in that case).

The MDS position paper can be found here:

www.movementdisorders.org/about/committees/stem-cell.php

There is a short lay summary in the position paper, and then a scientific summary that is three times as long.  I think most of you won’t have a problem reading the scientific summary!

Finally, here’s a link to the Movement Disorder Society’s short press release about the position paper:

www.movementdisorders.org/about/newsroom/release.php?contentid=1157

Robin

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Abstract

Movement Disorders. 2012 Oct;27(12):1552-5.  Epub 2012 Feb 23.

Intrathecal application of autologous bone marrow cell preparations in Parkinsonian syndromes.

Storch A, Csoti I, Eggert K, Henriksen T, Plate A, Lorrain M, Oertel WH, Antonini A.
Division of Neurodegenerative Diseases, Department of Neurology, Dresden University of Technology, Dresden, Germany.

BACKGROUND:
A growing number of patients is treated with intrathecal application of autologous bone marrow cells (aBMCs), but clinical data are completely lacking in movement disorders. We provide first clinical data on efficacy and safety of this highly experimental treatment approach in parkinsonian syndromes.

METHODS:
Retrospective data collection from patients with parkinsonism who spontaneously sought cell treatment. The application procedure was neither recommended nor performed by the authors.

RESULTS:
We report 17 patients with parkinsonian syndromes (Parkinson’s disease [PD], n = 7; multiple system atrophy [MSA], n = 7; various, n = 3) who received intrathecal application of aBMCs. We did not observe any changes in motor function, activities of daily living, global clinical impression, or antiparkinsonian medication after a median observation period of 10 months. Two patients reported a worsening of parkinsonian symptoms, but the intervention was otherwise safe and well-tolerated.

CONCLUSIONS:
Intrathecal application of aBMCs in uncontrolled conditions produces no clinical benefit in parkinsonian syndromes.

Copyright 2012 Movement Disorder Society.

PubMed ID#: 22362657