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44/100

✓ Peer-reviewed alzhub usefulness score 44 out of 100. Biomarkers

Topic: Amyloid, tau and blood-test diagnosis

Clinical trials to advance the diagnosis and treatment of Alzheimer disease (AD) may expose research subjects to discrimination risks. An individual enrolled in a research study that uses positive test results from amyloid PET imaging or CSF measures of β-amyloid 42 as inclusion criteria has biomarkers indicative of AD pathology. If insurers and employers learn this information, it could expose subjects to discrimination. Unfortunately, current legal and regulatory mechanisms are not sufficient to protect against harms that have significant consequences for subjects. Existing law that prohibits employment and insurance discrimination based on genetic status does not apply to amyloid biomarkers or any other biomarkers for neurodegenerative diseases. Gaps in legal protections fail to protect research subjects from discrimination by long-term care and disability insurers. This risk is particularly concerning because individuals with AD dementia ultimately need long-term care services. To maximize subject protections and advance valuable research, policymakers, investigators, and research institutions must address shortcomings in the design of the electronic medical record, revise laws to limit discrimination, and develop practices that inform research participants of risks associated with loss of confidentiality.

Cite this study APA, Vancouver, BibTeX · download .bib or .ris

APA 7th

Arias, J. J., & Karlawish, J. (2014). Confidentiality in preclinical Alzheimer disease studies: when research and medical records meet. Neurology. https://doi.org/10.1212/wnl.0000000000000153

Vancouver

Arias JJ, Karlawish J. Confidentiality in preclinical Alzheimer disease studies: when research and medical records meet. Neurology. 2014. doi:10.1212/wnl.0000000000000153. PMID: 24477112.

BibTeX

@article{arias2014-24477112,
  author  = {Arias, J. J. and Karlawish, J.},
  title   = {{Confidentiality in preclinical Alzheimer disease studies: when research and medical records meet}},
  journal = {Neurology},
  year    = {2014},
  doi     = {10.1212/wnl.0000000000000153},
  pmid    = {24477112},
  url     = {https://doi.org/10.1212/wnl.0000000000000153}
}

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Key findings

An individual enrolled in a research study that uses positive test results from amyloid PET imaging or CSF measures of β-amyloid 42 as inclusion criteria has biomarkers indicative of AD pathology.
Unfortunately, current legal and regulatory mechanisms are not sufficient to protect against harms that have significant consequences for subjects.
To maximize subject protections and advance valuable research, policymakers, investigators, and research institutions must address shortcomings in the design of the electronic medical record, revise laws to limit discrimination, and develop practices that inform research participants of risks associated with loss of confidentiality.

Why it matters

This paper discusses how people enrolled in Alzheimer's research using amyloid PET or spinal fluid amyloid measures could face discrimination from insurers and employers, and that current laws do not protect against this. It calls for policy and record-keeping changes to protect research participants, but it does not test any treatment or prevention.

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Study details

Evidence strengthLow

How this study scored 44/100

Published in a leading specialty journal. Scored zero for study design, sample size, effect reported, studied in people and randomised / blinded because the record does not state it.

Component	Points	Why
Journal tier	9 / 10	Tier 2 — leading specialty journal (Neurology)
Journal's citation record	4 / 4	Neurology: journal h-index 525 (OpenAlex, 2026-10-29)
Study design	0 / 12	No study design recorded — scores zero, not guessed (not stated in the record — scored 0)
Strength of evidence	1 / 5	Rated “low” in our summary
Peer-review validation	10 / 10	Peer-reviewed. Published as an article in a named peer-reviewed journal.
How recent	1 / 5	2014 — within 20 year(s) of the newest study here
Sample size	0 / 4	Participant count not stated — scores zero (not stated in the record — scored 0)
Effect reported	0 / 3	No effect size reported — scores zero (not stated in the record — scored 0)
Studied in people	0 / 3	Not stated whether this was studied in people — scores zero (not stated in the record — scored 0)
Randomised / blinded	0 / 2	No randomisation or blinding stated — scores zero (not stated in the record — scored 0)
Times cited	4 / 7	Cited 59 times (OpenAlex, 2026-10-10)
Citations per year	2 / 5	4.2 citations a year over 14 year(s) since 2014
Impact for its field and year	3 / 6	Cited 6.5× the average for papers of its field and year (OpenAlex FWCI)
Cited by studies here	1 / 6	Cited by 2 other studies in this library
Still being cited	1 / 4	Cited 14 times in 2024–2026 (2026 still in progress; OpenAlex)
Senior author's track record	3 / 4	Last-listed author Jason H. Karlawish: h-index 88 (OpenAlex, whole career)
Institution's track record	2 / 3	University of Pennsylvania: institution h-index 1,859 (OpenAlex)
Multi-centre collaboration	1 / 3	OpenAlex lists 2 institution(s) in 1 country
Indexed in PubMed	2 / 2	Indexed in PubMed (PMID 24477112)
Free to read	0 / 2	Behind a paywall — scores zero
Total	44 / 100	—

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