Internet stem cell therapy providers – Coding Frame
Purposes
- Identify providers of stem cell therapies online, answering the basic questions:
Who, what, for whom, how, and where.
- Identify the intended consumer, and the means of appeal to this audience.
- Characterize the expectations of stem cell therapeutics generated by these
websites.
- Assess the potential risk to public safety posed by premature DTC treatment
provision over the internet.
Inclusion – Websites offering stem cell therapeutics directly to consumers.
Standard of coding – What a lay consumer would perceive. E.g.: risks that are hidden in a
few case reports among many may be coded as “none are presented” (and/or “Risks may
be inferred from the clinic’s case reports”).
1. Basic Information
a. Name of organization
b. Website URL
c. Date of coding
d. Date website accessed / archived
e. Date website last updated
f. Associated locations – specify
g. Location’s associated activities
 Unspecified – 1
 Contact information - 2
 Location of incorporation - 3
 Treatment centre - 4
2. Treatment Information
a. Stem cell offerings
 Unspecified - 1
 Embryonic stem cells (eSC) – 2
 Fetal stem cells (fSC) – 3
 Adult stem cells (aSC) – 4
 Cord blood cells (cbSC) – 5
 Stem cell adjuncts (e.g.: telomerase) – 6
b. Is stem cell therapy autologous, allogeneic, or xenogeneic?
 Unspecified - 1
 Autologous – 2
 Allogeneic – 3
 Xenogeneic – 4
 Does not apply, no stem cells are being provided – 5
c. Is the stem cell lineage specified?
 Not mentioned – 1
 No, the cells are pluripotent – 2
 Yes, e.g.: haematopoietic – 3
d. If yes, specify.
e. Stem cell source
 Unspecified – 1
 Yes, from fat – 2
 Yes, from bone marrow – 3
 Yes, from peripheral blood – 4
 Yes, from aborted foetuses – 5
 Yes, from donors – 6
 Yes, other – 7
f. Are transplant processing or quality assurance procedures specified?
 No – 1
 Yes – 2
g. Transplantation procedure
 Unspecified - 1
 Yes, intravenous injection – 2
 Yes, sub-cutaneous injection – 3
 Yes, by mouth – 4
 Yes, CSF – 5
 Yes, surgical transplantation to organ of interest – 6
h. Is immune rejection of the graft addressed in the treatment protocol?
 No - 1
 Yes, by HLA-matching - 2
 Yes, by immunosupression - 3
i. Does the site note that the treatment is considered experimental by
Western medical standards?
 No – 1
 Yes – 2
j. Subjective impression: Any disclaimer noted above notwithstanding, is the
treatment seen as being experimental, or routine/ready for routine access?
 Experimental – 1
 Ambiguous – 2
 Routine – 3
k. Adjunct therapies
 None mentioned – 1
 Physical medicine and rehabilitation services – 2
 Traditional/homeopathic medicines – 3
l. Treatment cost
 Unmentioned – 1
 Mentioned, figures or ranges provided. – 2
m. If cost figures or ranges are provided, specify.
(Figures rounded to nearest $10, Euro exchange rate taken to be 1.44 CAD.)
3. Stem cell science
a. How the treatment works
 No explanation - 1
 Don’t know, exactly - 2
 Stem cells migrate to pathology – 3
 Stem cells repair damaged tissue – 4
 Stem cells replace damaged or depleted tissue - 5
 Stem cells generate local environmental effects (e.g.: growth
factor production) – 6
 The stem cell infusion triggers or modulates self-healing – 7
 Stem cells fuse with existing cells – 8
 Stem cells have systemic effects – 9
b. Stem cells and disease: Site portrays a deficiency in a finite pool of stem
cells as a major mechanism or contributor to disease.
 Not at all / Minimally – 1
 Somewhat - 2
 Prominently - 3
c. Is the treatment is portrayed as revolutionary, i.e.: a marked departure
from current therapies?
 Not at all / Minimally – 1
 Somewhat - 2
 Prominently - 3
d. Is the treatment portrayed as the clinical application of routine or familiar
procedures?
 Not at all / Minimally – 1
 Somewhat - 2
 Prominently - 3
e. The site appeals to holistic, natural, or magical powers of renewal
 Not at all / Minimally – 1
 Somewhat – 2
 Prominently – 3
f. The site appeals to the scientific deconstruction of health and illness
 Not at all / Minimally – 1
 Somewhat – 2
 Prominently - 3
g. Knowledge is portrayed as being incomplete or uncertain
 Not at all / Minimally – 1
 Somewhat – 2
 Prominently - 3
h. Knowledge is portrayed as being advanced or certain
 Not at all / Minimally – 1
 Somewhat – 2
 Prominently - 3
i. Claims are substantiated mainly by ...
 Claims are unsubstantiated – 1
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Expert testimonial - 2
Expert consensus - 3
Participation in a local regulatory regime - 4
Association with professional or academic institutions - 5
Anecdotes or the clinic’s previous experience with the therapy -6
Patient testimonials - 7
Lay literature (e.g.: news articles) - 8
Case reports - 9
Abstracts or presentations at conferences or meetings - 10
Published works – 11
Organization’s participation in clinical trials or research – 12
4. Indications / Associated Coditions
a. Manner of presetation
 None are presented. - 1
 Treatable diseases may be inferred from the clinic’s case reports,
anecdotes, news reports, or patient testimonials – 2
 The site lists treatable or previously treated diseases – 3
b. There is the sense that indications for stem cell therapies is indeterminate
(e.g.: by indeterminate vocabulary, “... and other conditions” or “Indications
include ...”; or by over-broad disease categories; etc..)
 Not applicable – 1
 Not at all / Minimally – 2
 Somewhat – 3
 Prominently – 4
c. Associated diseases – by organ system / pathology
(Code autoimmune/rheumatic, cancer, or infection as 13, 14, and 15,
respectively.)
 None - 1
 Circulatory - 2
 Digestive - 3
 Endocrine - 4
 Integumentary - 5
 Musculoskeletal – 6
 Nervous – 7
 Psychiatric – 8
 Reproductive - 9
 Respiratory - 10
 Urinary/Excretory - 11
 Haematological, non-cancer (e.g.: anemia) - 12
 Autoimmune/rheumatic - 13
 Cancer - 14
 Infectious diseases – 15
d. Are congenital diseases given as indications?
(Congenital diseases are those present at birth, e.g.: cerebral palsy.)
 No - 1
 Yes – 2
e. If yes, specify.
f. Is “aging” an indication?
 No - 1
 Yes - 2
g. Are cosmetic or lifestyle enhancement purposes given as indications?
 None - 1
 Cosmetic - 2
 General stress or fatigue - 3
 Desire for health-enhancement, otherwise healthy - 4
h. Are any conditions or patients excluded?
 No - 1
 Yes – 2
i. If yes, specify.
5. Benefits of treatment
a. Manner of presentation
 None are presented. - 1
 Benefits may be inferred from the clinic’s case reports,
anecdotes, news reports, or patient testimonials – 2
 The site lists or notes previous or potential benefits – 3
b. Treatment appears generally beneficial
 No - 1
 Yes - 2
c. Associated benefits include
 No benefits are mentioned - 1
 Improvement in disease state - 2
 Physical rejuvenation (e.g.: improved vitality, better sleep) - 3
 Mental rejuvenation (e.g.: improved cognition) - 4
 Cosmetic enhancement - 5
 Longer life – 6
d. Likelihood of benefits
 No benefits are presented – 1
 Benefits are presented, but likelihood is not presented
meaningfully - 2
 Very unlikely (e.g.: rare) – 3
 Unlikely - 4
 Possible – 5
 Likely - 6
 Very likely (e.g.: certain) – 7
6. Risks of treatment
a. Manner of presentation
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None are presented. - 1
Risks may be inferred from the clinic’s case reports, anecdotes,
news reports, or patient testimonials – 2
 The site lists or notes previous or potential risks – 3
b. Treatment appears generally safe
 No - 1
 Yes - 2
c. Associated risks include
 No risks are presented – 1
 Deterioration of disease state – 2
 Immune rejection of stem cell graft – 3
 Risks related to impure transplant materials (e.g.: infection) – 4
 Surgical risks (e.g.: anaesthesia, infection) – 5
 Graft versus host disease (GvHD) – 6
 Teratoma or other cancer – 7
d. Likelihood of risks
 No risks are presented – 1
 Risks are presented, but likelihood is not quantified - 2
 Irrelevant or Very unlikely (e.g.: rare) – 3
 Unlikely - 4
 Possible – 5
 Likely - 6
 Very likely (e.g.: certain) – 7
7. Ethical issues
a. Are social/ethical issues mentioned?
 None – 1
 Issues related to the source of transplantation material (e.g.:
moral status of the embryo) – 2
 Issues related to the provision of unproven technologies – 3
 Issues related to accessibility of health care – 4
b. Relevancy
 No social/ethical issues are mentioned – 1
 Issues are irrelevant to the services provided – 2
 Issues may or may no be relevant to the services provided – 3
 Issues are relevant to the services provided – 4
8. Website aesthetics and intended audience
a. This website appears to target
 Patients – 1
 The general public – 2
 Health professionals – 3
 Policy-makers / health regulators – 4
 Researchers – 5
b. Website appeal – the website appeals mainly through
 Cosmesis – 1
 Curiosity – 2
 Desperation/ Frustration with conventional medicine – 3
 Health-enhancement – 4
 Holism – 5
 Normalization – 6
 Technophilia (i.e.: a strong enthusiasm for technology) – 7
c. Visual style – the website is mainly ...
 Graphically oriented – the website features prominent decorative
graphics and multimedia gadgets – 1
 Both graphic and text orientations are important – 2
 Text oriented – the website features prominent amounts of text –
3
 Separate graphically oriented and text-oriented pages are
available – 4
d. Language – the website’s language is mainly
 Easily interpreted by lay viewers – 1
 A mix of technical and easily interpreted passages – 2
 Technical – 3
 Separate lay and technical pages are available – 4