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Participant attitudes toward returning individual results from CADASIL research
Burks, D. K.; Penziner, E.; Clark, L. R.; Ketchum, F. B.; Croes, K. D.; Paulsen, J. S.; United States CADASIL Consortium. medRxiv (preprint), 2026-08-25
Topic: Risk, prevention and care in population studies
INTRODUCTIONNeurodegenerative research identifies biomarkers to confirm presence of disease and inform about risk for clinical symptoms. Expert guidance advises caution about disclosing individual research results (IRR), but participant interest remains high even when IRR may not inform individual prognosis. Existing studies of stakeholder attitudes emphasize Alzheimers disease (AD) biomarkers. We explore participant attitudes toward IRR from the United States CADASIL Consortium (USCC), an observational study of Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy (CADASIL), the most heritable form of vascular dementia. METHODSSince CADASIL research participant attitudes are unstudied and AD-focused guidelines for IRR may not generalize to populations with dominantly inherited conditions, we surveyed USCC participants using three 5-point Likert items and one open-ended question. Descriptive statistics were analyzed for Likert items. The distribution of responses to one item was directly compared to an AD participant survey. Open-ended responses underwent qualitative content analysis. RESULTSWe received 152 responses. The highest-rated reason to return IRR was "learn about my disease and its predicted course". The highest-rated IRR were imaging/MRI scans and cognitive testing. Hypothetical negative outcomes were rated as a little to somewhat concerning. USCC respondents rated reasons to return IRR higher than AD counterparts, with statistically significant differences for seven of eight items. In open-ended responses, the most frequent code was "IRR return will help improve my health and well-being". DISCUSSIONMost respondents expressed support for disclosure upon participant request. These findings could inform IRR guidance for CADASIL and other disorders and investigations of personal utility.
Key findings
- Expert guidance advises caution about disclosing individual research results (IRR), but participant interest remains high even when IRR may not inform individual prognosis.
- The distribution of responses to one item was directly compared to an AD participant survey.
- USCC respondents rated reasons to return IRR higher than AD counterparts, with statistically significant differences for seven of eight items.
- These findings could inform IRR guidance for CADASIL and other disorders and investigations of personal utility.
Why it matters
This survey of CADASIL research participants found high interest in receiving individual research results, with respondents rating reasons to return results higher than Alzheimer's disease counterparts on most items. It addresses research ethics and communication, not treating, curing or preventing Alzheimer's disease.
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Study details
- Evidence strengthLow
How this study scored 16/100
Preprint — not yet peer-reviewed. It scored 21 on the same rubric, but non-peer-reviewed sources are capped at 16, so it shows as 16. Scored zero for study design, sample size, effect reported, studied in people and randomised / blinded because the record does not state it. We have no data on impact for its field and year, so that was left out: it earned 20 of the 94 points we could judge it on, which is 21 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 2 / 10 | Tier 4 — not a peer-reviewed journal (medRxiv (preprint)) |
| Journal's citation record | 0 / 4 | Not a journal article, so the journal's record does not count |
| 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 | 4 / 10 | Preprint — not yet peer-reviewed. Hosted on a preprint server. |
| How recent | 5 / 5 | 2026 — within 1 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 | 0 / 7 | Cited 0 times (OpenAlex, 2026-10-10) |
| Citations per year | 0 / 5 | 0.0 citations a year over 2 year(s) since 2026 |
| Impact for its field and year | — / 6 | No field-weighted citation impact (OpenAlex has none yet) — left out of this score |
| Cited by studies here | 0 / 6 | No other study in this library cites it |
| Still being cited | 0 / 4 | Cited 0 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 3 / 4 | Last-listed author Jane S. Paulsen: h-index 91 (OpenAlex, whole career) |
| Institution's track record | 2 / 3 | University of Wisconsin–Madison: institution h-index 1,518 (OpenAlex) |
| Multi-centre collaboration | 0 / 3 | OpenAlex lists 1 institution(s) in 1 country — scores zero (affiliation lists can be incomplete) |
| Indexed in PubMed | 1 / 2 | Not in PubMed, but has a DOI |
| Free to read | 2 / 2 | Free to read |
| Points | 20 / 94 | Scored on 19 of 20 parts. We have no data for the rest, so they are left out: 20 of the 94 points we could judge it on is 21 out of 100. |
| Total | 21 / 100 | Capped to 16 because this is not a peer-reviewed article. |
What each of these 20 components measures, and what this score is not →
Read the original
Full text: free to read — OpenAlex lists this copy as free to read: the link above (checked 6 Feb 1020).
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
Built from the record alzhub holds for this paper, not looked up. Volume, issue and page numbers are not held in the record. The record names 7 authors; APA and Vancouver show the first six, BibTeX and the downloads carry all of them. Check the citation against the original before you use it.
APA 7th
Burks, D. K., Penziner, E., Clark, L. R., Ketchum, F. B., Croes, K. D., Paulsen, J. S., et al. (2026). Participant attitudes toward returning individual results from CADASIL research. medRxiv (preprint). https://doi.org/10.64898/2026.08.21.26361045
Vancouver
Burks DK, Penziner E, Clark LR, Ketchum FB, Croes KD, Paulsen JS, et al. Participant attitudes toward returning individual results from CADASIL research. medRxiv (preprint). 2026. doi:10.64898/2026.08.21.26361045.
BibTeX
@article{burks2026-09e906a4,
author = {Burks, D. K. and Penziner, E. and Clark, L. R. and Ketchum, F. B. and Croes, K. D. and Paulsen, J. S. and {United States CADASIL Consortium}},
title = {{Participant attitudes toward returning individual results from CADASIL research}},
journal = {medRxiv (preprint)},
year = {2026},
doi = {10.64898/2026.08.21.26361045},
url = {https://doi.org/10.64898/2026.08.21.26361045}
}
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