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Stem Cell Treatments: A quick guide for medical practitioners and FAQ: a resource for patients submission

ID: 
9
This submission reflects the views of
Organisation Name: 
NSW Stem Cell Network
Please identify the best term to describe the Organisation: 
Stem cell society
Personal Details
Questions
1. Is the document in the appropriate format? If not, how could the document be better formatted?: 

Overall, these documents are informative, but their impact could be improved by adding appropriate images to sell the messages better.  A graphic artist would be helpful with this.  

2. Is the language appropriate for the target audience (i.e. medical practitioner for the quick guide on stem cell treatments and patient for the FAQ resource)?: 

Yes..but add visual images

3. Does the document contain relevant information? If not, which sections do you consider to be irrelevant?: 

Yes, when modified as described below

4. Does the document exclude any important information that would be useful to medical practitioners or patients?: 

Yes, it does not mention a number of autologous stem cell therapies in Australia, which are a form of stem cell tourism.  

5. How could this information best be disseminated to patients and medical practitioners?: 

Versions of this should be sent to all Australian medical societies for placement on their web site ± distribution to their members.

6. How could general practitioners best access this information (i.e. an appropriate website)?: 

Multiple web sites but not just for general practitioners, also specialist societies, e.g., Royal Australasian College of Physicians

Specific Comments
Specific Comments: 
Frequently Asked Questions - Q1

Suggest changing the last sentence to make it clearer why stem cells hold out such hope as therapies”   The ability for stem cells to differentiate and self-replicate is what has stimulated such enormous public and professional interest in the use of stem cells in the treatment of diseasemakes stem cells so promising in the treatment of disease

Frequently Asked Questions - Q2

Like bone marrow transplantation, cord blood transplantation is also a main stream therapy today for treatment of haematological malignancies.  This needs to be added.

Frequently Asked Questions - Q3

It is suggested that the first sentence be altered to read:  Ideally, a medical treatment should must be tested in a clinical trial to show that it is safe and effective before it is made available to the public. 

Frequently Asked Questions - Q4

In paragraph 3, readers are encouraged to approach the TGA to find out which stem cell therapies are approved.  And yet, in the following paragraph, advice is given that only bone marrow (and cord blood) therapies are approved.  Paragraph 3 is redundant.

Stem Cell Treatments - Q1

Suggest modifying the last dot point by including a reference to unproven stem cell therapies within Australia, as follows:

  • Provide patients with background information about stem cells, clinical trials and points to consider before deciding whether to participate in unproven stem cell treatments whether within or outside of Australia. 
Stem Cell Treatments - Q2

Suggest changing the last sentence to make it clearer why stem cells hold out such hope as therapies:  The capability of stem cells to self-replicate and to differentiate into a specific, more specialised cell type is what has stimulated such enormous public and professional interest in the use of stem cells in the treatment of diseasewhat makes stem cells so promising in the treatment of specific diseases.

Stem Cell Treatments - Q3

The nationality of the patient has no relevance and should be removed.  If it is chosen to leave the nationality of the 1st patient, the fact that the patient received the therapy in Russia needs to be added, and the nationality of the 2nd patient is Thai. 

 Reference 2 is incorrect.  The edition is no 7 and not 2.  The entire reference is:  Thirabanjasak, D., Tantiwongse, K. and Thorner, P.S (2010). Angiomyelproliferative lesions following autologous stem cell therapy. Journal of the American Society of Nephrology; 21(7) 1218-1222.

 The etymologically correct spelling of the unborn offspring is fetus not foetus.  Origin of the word is L. fetus ‘pregnancy, childbirth, offspring’ (see Oxford English Dictionary).  Please correct the spelling, both in this Section and in Section 6.

  It is noted that there are two brief examples about victims of stem cell therapy.  It is suggested that a case study of a patient that is keen to use stem cell therapy be included, with a discussion between a clinician and the patient about this (linked to a video).

Stem Cell Treatments - Q4

Typographical correction needed:

Several years are is necessary to enable rigorous testing for safety, effectiveness and long term benefit.

Stem Cell Treatments - Q5

It is suggested that reference to the fact that there are clinics in Australia also offering unproven therapies be added.  This is especially so for some autologous transplants, that is, cells taken from a patient, e.g., by liposuction, and administered to the same patient, for example, for treatment of arthritis.  In these situations, there is no external oversight of such therapies.

 

Stem Cell Treatments - Q6

Quick Tips for medical practitioners:

Suggest adding as one possibility in the patient’s quest for more knowledge, that referral to one or more practitioners, usually specialists, with expertise in the relevant area of stem cells be carried out.  The NSW Stem Cell Network has such a list, and this can be obtained by contacting its Manager on stemcellinfo@stemcellnetwork.org.au or telephoning 9552 9981. 

Page reviewed: 7 February, 2014