Internet stem cell therapy providers – Coding Frame
1. Basic Information
a. Name of organization
b. Website URL
c. Date website accessed / archived
d. Date website last updated
e. Associated locations
2. Treatment Information
a. What products are being offered?
 Embryonic stem cells – 1
 Fetal stem cells – 2
 Adult stem cells – 3
 Cord blood cells – 4
 Stem cell adjuncts (e.g.: telomerase) – 5
b. Is stem cell therapy autologous, allogeneic, or xenogeneic?
 Autologous – 1
 Allogeneic – 2
 Xenogeneic – 3
 Does not apply, no stem cells are being provided – 4
c. Is the stem cell lineage specified?
 Not mentioned – 1
 No, the cells are pluripotent – 2
 Yes, e.g.: haematopoietic – 3
d. Is the stem cell source specified?
 No – 1
 Yes, from fat – 2
 Yes, from bone marrow – 3
 Yes, from peripheral blood – 4
 Yes, from aborted fetuses – 5
 Yes, other – 6
e. Are transplant processing procedures specified?
 No – 1
 Yes – 2
f. Are measures assuring the quantity/quality of transplant material
mentioned?
 No – 1
 Yes – 2
g. Is the transplantation procedure specified?
 No – 1
 Yes, intravenous injection – 2
 Yes, sub-cutaneous injection – 3
 Yes, by mouth – 4
 Yes, surgical transplantation to organ of interest – 4
h. Is it clear that the clinic generally follows up on its patients?
 No - 1
 Yes – 2
i. Is immune rejection of the graft addressed in the treatment protocol?
 No - 1
 Yes, by HLA-matching - 2
 Yes, by immunosupression - 3
j. The treatment is portrayed as being
 Experimental - 1
 Ready for routine clinical application – 2
k. Are aspects of the treatment trademarked or proprietary?
 No – 1
 Yes - 2
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 replace damaged or depleted tissue - 4
 Stem cells generate local environmental effects (e.g.: growth
factor production) – 5
 Stem cells fuse with existing cells – 6
b. Portrayal of stem cells
 Stem cells give rise to body tissues - 1
 A deficiency in a finite pool of stem cells is a major mechanism
of disease - 2
 Stem cells have inherent powers of rejuvenation - 3
c. Normalization?
 The treatment is portrayed as revolutionary - 1
 The treatment is portrayed as the clinical application of routine
or familiar procedures - 2
d. Appeals to perceptions of holism or science?
 The site refers prominently to holistic, natural powers of renewal
-1
 The site refers prominently to the scientific deconstruction of
health and disease - 2
e. State of knowledge
 Knowledge is portrayed as being advanced or certain - 1
 Knowledge is portrayed as being incomplete or uncertain - 2
f. Claims are substantiated by
 Individual “experts” - 1
 Expert consensus - 2
 Participation in a local regulatory regime - 3
 Professional or academic institutions - 4
 Anecdotes or the clinic’s previous experience with the therapy -5
 Patient testimonials - 6
 Lay literature (e.g.: news articles) - 7
 Case reports - 8
 Abstracts or presentations at conferences or meetings - 9
 Published works - 10
g. Abstracts or presentations cited concern ...
 Basic science - 1
 Clinical studies in humans - 2
h. Published works cited concern ...
 Basic science - 1
 Clinical studies in humans - 2
4. Indications
a. Indeterminate vocabulary (e.g.: “... and other conditions” or “Indications
include ...”)
 No - 1
 Yes - 2
b. Disease conditions – general
 None - 1
 Heart disease - 2
 Peripheral cardiovascular conditions - 3
 Neuro-degenerative diseases - 4
 Neurological injury - 5
 Diabetes - 6
 Non-cancer haematological disease (e.g.: anemia) - 7
 Cancer - 8
 Rheumatoid or systemic autoimmune disease – 9
 Respiratory disease – 10
 Kidney disease - 11
 Diseases of the reproductive system - 12
 Diseases of the urinary tract - 13
 Gastro intestinal conditions (including hepatitis) - 14
 Musculo-skeletal disease - 15
 Infectious diseases - 16
 Others - 17
c. Are congenital diseases given as indications?
 No - 1
 Yes - 2
d. Is “aging” an indication?
 No - 1
 Yes - 2
e. Are cosmetic or lifestyle enhancement purposes given a indications?
 None - 1
 Cosmetic - 2
 General stress or fatigue - 3
 Desire for health-enhancement, otherwise healthy - 4
f. Are any conditions or patients excluded?
 No - 1
 Yes - 2
5. Benefits and risks of treatment
a. Treatment is generally beneficial
 No - 1
 Yes - 2
b. Benefits include
 Improvement in disease state - 1
 Physical rejuvenation (e.g.: improved vitality, better sleep) - 2
 Mental rejuvenation (e.g.: improved cognition) - 3
 Cosmetic enhancement - 4
 Longer life - 5
c. Treatment is generally safe
 No - 1
 Yes - 2
d. The site mentions, and does not deny, risks like:
 Deterioration of disease state – 1
 Teratoma or cancer - 2
 Risks related to impure transplant materials (e.g.: infection) - 3
 Surgical risks - 4
 Graft versus host disease - 5
e. The site explicitly denies or minimalizes certain risks
 Deterioration of disease state - 1
 Teratoma or cancer - 2
 Risks related to impure transplant materials (e.g.: infection) - 3
 Surgical risks - 4
 Graft versus host disease - 5
f. How is immune rejection of the stem cell graft represented?
 Immune rejection is unmentioned - 1
 Immune rejection is denied, or portrayed as certainly rare - 2
 Immune rejection is mentioned as a potential risk - 3
g. Knowledge of benefits and risks is portrayed as
 Advanced or certain - 1
 Incomplete or uncertain - 2