Trial endpoint atlas
What cystic fibrosis trials register as their main outcomes
A count of the primary (main) outcomes that cystic fibrosis (CF) trials testing a treatment or other intervention entered in ClinicalTrials.gov, grouped by what they measure. Taken from one dated copy of one registry. A trial can register several main outcomes.
Registry data from ClinicalTrials.gov, an online database; the U.S. National Library of Medicine maintains its website. This lab is independent of the registry; the grouping and counts are the lab's work, not the registry's.
Not shown
For each class named here:
We counted this class but do not show it: on a check against model-made labels, our tagging fell below the lab's accuracy threshold, so the number is not reliable enough to publish.
- Lung function, not specified
- Gastrointestinal and pancreatic
- Liver
- Other named instrument
- Patient-reported, instrument not named
- Microbiology
- Healthcare use
- Survival and transplant
- Feasibility and adherence
- Physical activity
Not shown does not mean no study registered it: it means our count was not reliable enough to publish.
About 188 of 1072 studies have main outcomes only in classes we do not show. Those classes hold 388 of the 2052 main-outcome entries (18.9%). Some studies may be missing from, or wrongly counted in, this count of studies.
- Registry data processed
- Dated copy
d164700bb17d- Studies
- 1072
- Main-outcome entries
- 2052
- Sorted by rule
- 1839 entries, lexicon
0.3.2-draft - Sorted by a model, checked against an exact quote from the record
- 70 entries
- Named no measure
- 32 entries
- Not yet in a class
- 111 entries
- Synthetic marker
- none found (this does not prove where the data came from)
- Hand check of a sample
- not recorded in this data file
Registry records change; the live record on ClinicalTrials.gov is current, this page is not. Open ClinicalTrials.gov (opens another site).
Studies are the main unit of count: each study is counted once in each class it names. An outcome entry is one main outcome as the trial team wrote it: a measure, a description and a time frame. Each figure states its unit in its caption.
Figures
Figure 1. Studies by class of main outcome and start year
Current registered wording; earlier versions may differ. A measure that appears often is not a better measure. Unit: studies, each counted once in each class it names; a study can name several classes, so the rows can add up to more than the number of studies. Each study is counted once in its start year. Planned start dates are marked as planned. Studies whose registry record gives a start date but no date type are shown with their own mark. Studies with no start date are not in the figure; the note under it gives their count.
- dot: none in this dated copy
- ring: 1 to 4 studies, too few to read as a trend
- filled: 5 or more studies, area shows the count
- dashed: includes planned starts
- hatched: year not yet over
- shaded: planned starts only
- slash: start date given, type not recorded
Figure 1 by five-year period, as a table: 27 class rows, and a total row
Figure 1 as a table: 27 class rows, and a total row
Figure 2. Studies by class of main outcome and trial phase
Current registered wording; earlier versions may differ. A measure that appears often is not a better measure. Unit: studies, each counted once in each class it names; a study can name several classes, so the rows can add up to more than the number of studies. A total across classes is not shown, because a study in several classes would be counted more than once. NA is shown as the registry wrote it; this page does not treat it as missing.
- dot: none in this dated copy
- ring: 1 to 4 studies, too few to read as a trend
- filled: 5 or more studies, area shows the count
Figure 2 as a table: 27 class rows
What each measure means
Plain-language notes for each measure wait for a clinician's review; until then the atlas shows class names only.
Lung function and gas exchange
- FEV1 164 studies
- Other spirometry 46 studies
- Lung clearance index 26 studies
- Airway resistance, compliance and lung volumes 13 studies
- Oxygen and carbon dioxide levels 22 studies
CFTR function
- Sweat chloride 16 studies
- Nasal potential difference 16 studies
- Other CFTR biomarker 16 studies
- Pulmonary exacerbations 40 studies
- Nutrition and growth 46 studies
- Bone mineral density 8 studies few checked
- Glucose and cystic fibrosis-related diabetes 49 studies
- Sinus and upper airway 9 studies
- CFQ-R 23 studies
- Imaging 41 studies
Mucus and mucociliary clearance
- Mucociliary clearance 16 studies
- Sputum amount and properties 21 studies
- Inflammation markers 42 studies
Molecular and oxidative markers
- Gene expression and methylation 7 studies
- Oxidative stress markers 12 studies
- Safety and tolerability 220 studies
- Pharmacokinetics 91 studies
- Exercise capacity 49 studies
- Muscle strength and endurance 11 studies
- No measure named 32 studies few checked
No study in this dated copy: Intestinal current measurement, Other.
Which measures are registered together
A study can register main outcomes in several classes. A separate page counts, for each pair of classes, the studies that registered a main outcome in both: studies, not entries. It shows what trials registered together, not which measures agree, replace or predict each other.
If you live with cystic fibrosis or care for someone
This atlas counts what trial teams wrote down as their main outcomes. It says nothing about any treatment, any person's care or whether someone could join a trial. For that, talk with a cystic fibrosis care team.
How this was made
- One dated copy. The lab's tools fetched one copy of the registry's answer and recorded a hash of the pages it saved and the date the registry processed the data.
- Stated scope. Interventional studies whose condition list names cystic fibrosis, all statuses and dates, were kept. The registry's answer held 1772 studies; 1072 kept. A second search, by term, found 1072 studies in scope. The counts come from the condition search: 0 studies found only by it are counted, and 0 studies found only by the term search are not counted.
- Rules sort first. A versioned rule lexicon sorted each main outcome into a class. The rules do not sort vague wording such as “lung function” or “efficacy” as FEV1. Entries with vague wording: 22; naming no measure: 32; not yet in a class: 111. An entry not yet in a class is not the class Other, which a model or a person gives to a measure that fits none of the classes.
- A person checks: not recorded in this file. The method calls for a person to label a sample by hand before seeing any rule or model result, and to measure the rules against it. This data file does not record that check.
- Counts recomputed. A script recomputes the counts from the dated copy before a page is made, and this page is generated from those counts, not typed. The pairs of classes registered together are counted the same way, from the same dated copy, in studies.
The lab accuracy gate requires precision of at least 0.85 and recall of at least 0.80 where 10 or more entries estimate it (stop rule S1), other plus unclassified under 15.0% (S2), route difference under 10.0% unexplained (S3), and negative controls passed with synthetic markers checked (S0, S4).
Accuracy terms in plain words
- Weighted estimate
- A weighted estimate accounts for different sampling rates across strata, giving rarer outcome classes higher weight per sampled row so estimates reflect the whole snapshot rather than just the sampled subset.
- Few checked
- Few checked means fewer than 10 labelled entries were available to reliably estimate precision or recall, so counts are shown without percentage shares or sorting accuracy metrics.
- Synthetic marker
- A synthetic marker is a testing flag ensuring that artificial test fixtures can never be published as real registry data (stop rule S0).
Download the data
The counts behind the figures, with the same source, dates, changes, license line and note on keeping the data as this page.
How to cite
Sensei Ewok Research Lab (senseiewok.ai). Trial endpoint atlas, dated copy d164700bb17d, lexicon 0.3.2-draft, registry data processed 2026-10-09, accessed [the date you read it]. Counts derived from ClinicalTrials.gov (an online database whose website the U.S. National Library of Medicine maintains).
Where the data come from, and what the lab changed
Registry data from ClinicalTrials.gov, an online database; the U.S. National Library of Medicine maintains its website. This lab is independent of the registry; the grouping and counts are the lab's work, not the registry's.
- Source
- ClinicalTrials.gov
- Data processed by the registry
- (as given:
2026-10-09T09:00:05; the registry gives no time zone) - Live record
- Registry records change; the live record on ClinicalTrials.gov is current, this page is not.
- License
- The lab's licence covers its own tags, code and counts only; registry text and fields remain ClinicalTrials.gov data under its terms.
- No warranty
- ClinicalTrials.gov states that the U.S. Government makes no warranties, expressed or implied, about its data and assumes no liability for any party's use of them.
- Sponsor responsibility
- Study sponsors and investigators write and are responsible for their own records. The registry's Disclaimer says the U.S. government "does not review or approve the safety and science of all studies listed on this website" and that NLM staff only review study information for apparent errors, deficiencies or inconsistencies. See the registry's Disclaimer.
- Disclaimer page
- https://clinicaltrials.gov/about-site/disclaimer
- Disclaimer last updated
- 2023-08-03
The registry's terms page, the dated copy's date, every change the lab made, and keeping the data
- Dated copy taken
- (
2026-10-11 03:59:17 UTC) - Registry terms
- Terms and Conditions of ClinicalTrials.gov (opens another site) (last updated )
- Changes the lab made
- Primary-outcome wording was classified into classes by the versioned rule lexicon 0.3.2-draft (sha256 f4bd1af4c664); a model-proposed class is counted only when its quote is an exact piece of the registry text.
- Studies were left out by stated scope rules, with these counts: X1 554, X2 7, X3 0, X4 91, X5 48, X6 0 (explained in trial-atlas-data-dictionary.txt; X6 is a person's exclusion list).
- Start dates without a recorded date type are counted as their own kind; no type is assumed.
- No registry wording was clipped by these tools; any clipping on a published page must be added to this list.
- Registry pages were re-saved as UTF-8 JSON after parsing; values and key order are kept, whitespace is not.
- This page and its downloads show counts only: no registry wording, trial ids or sponsor names.
- Start years are also grouped into five-year periods for narrow screens; the yearly counts are in the downloads.
- Phase codes are written in plain words (PHASE1 as Phase 1, PHASE1/PHASE2 as Phase 1/2, EARLY_PHASE1 as Early phase 1); NA is shown as written, and a study with no phase is shown as None given.
- Keeping the data
- The registry's terms apply for as long as the data are kept, in any copy, file or page made from them.
- Third party copyright
- Some registry data may be subject to third-party copyright, and the data carry an international copyright outside the United States and its Territories or Possessions.
- Keep current
- The registry says it is updated daily and that data in any publication or distribution should be kept current at all times. This copy is dated and may be out of date; the live record is the current one.