Who Participates in MS Clinical Trials? The NARCOMS Experience (P3.044)
Bibliographic record
Abstract
OBJECTIVE: To characterize socio-demographic and MS characteristics with respect to participation in MS clinical trials from the NARCOMS registry. BACKGROUND: Knowing who participates in research and where they receive their medical care can help to better inform potential participants of available research and facilitate recruitment. DESIGN/METHODS:The NARCOMS Spring 2015 Update survey included the question: Have you ever been in an MS clinical trial? Never, Yes (only in past, in past and currently, currently in first trial). Respondents also reported current MS type as Relapsing (RRMS, PRMS, or report of relapse in prior 6 months), Progressive (PPMS, SPMS and no relapse in prior 6 months), Other (CIS, Don’t Know, Unsure), and where they receive MS care (MS Center, Neurologist, General Practitioner, Other Healthcare Provider, No care for MS). RESULTS: Of 8,004 respondents, 7,900 (98.7[percnt]) completed the clinical trials question: 79.4[percnt] Female, 64.9[percnt] currently relapsing, 25.1[percnt] progressive, 91.1[percnt] Caucasian, median(IQR) PDDS of 4=Early Cane (1=Mild, 6=Bilateral Support). Overall, 26.9[percnt] report having participated in an MS clinical trial: 22.5[percnt] past, 2.9[percnt] past and current, 1.8[percnt] current and first. Participation did not differ by gender (p=0.66) or PDDS (p=0.2521) but differed by location of care and age (both p<0.0001). Of those that receive care in an MS center, 37.1[percnt] have participated in an MS trial (mean age 57.4), compared to 23.0[percnt] seen by a Neurologist (59.0), 21.7[percnt] General Practitioner (64.4), 20.4[percnt] Other Healthcare Provider (65.1). Of those not currently receiving care for their MS 21.9[percnt] (62.9) have participated in a trial. Considering current location of MS care, a higher proportion of those with a progressive form of MS report trial participation (31.4[percnt] vs 26.3[percnt] Relapsing, 20.4[percnt] Other; p<0.0001). CONCLUSIONS: Over one-quarter of NARCOMS participants report clinical trial participation. Older age, progressive MS, and receiving treatment at an MS Center are associated with higher participation.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.032 | 0.069 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.003 | 0.002 |
| Scholarly communication | 0.004 | 0.004 |
| Open science | 0.001 | 0.004 |
| Research integrity | 0.002 | 0.003 |
| Insufficient payload (model declined to judge) | 0.019 | 0.003 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".