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About this check

The sorting behind these counts was checked against labels made by a council of models; for some classes too few entries could be checked. No person has read the individual rows, and no clinician has read the class definitions.

Trial endpoint atlas · Patient-reported

CFQ-R

Plain-language notes for each measure wait for a clinician's review; until then the atlas shows class names only.

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.

These are counts of what trial teams registered, not trial results. What this does not say

23studies name this class
28main-outcome entries in this class
17of these studies have every listed condition naming cystic fibrosis
6list cystic fibrosis among other conditions
22different lead sponsors
0studies with no lead sponsor recorded

Studies are counted once here however many of their main outcomes fall in this class. This page shows counts only; the registry wording behind them is not shown.

How well was this sorted?

A sample of entries was checked against labels made by a council of models.

Model-sorted entries are included in the accuracy sample.

  • Precision 1.00 (interval 1.00 to 1.00; stratified bootstrap): of the entries our tagging put in this class, the estimated share that the model-made labels also put there; a weighted estimate from 28 entries checked.
  • Recall 0.97 (interval 0.97 to 0.97; stratified bootstrap): of the entries the model-made labels put in this class, the estimated share that our tagging also put there; a weighted estimate from 29 entries checked.

This is agreement with labels made by a council of models. No person has read the individual rows, and no clinician has read the class definitions.

About this dated copy
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.

By the year the study started

  • 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

CFQ-R: studies by start year

CFQ-R: studies by start year One row: this class's studies by start year, in the same columns as Figure 1 on the atlas's front page. Columns are study start years, 1993 to 2026. Each lit circle is a count of studies, with the number printed under it. A hatched column labelled year not yet over holds the date the registry processed the data; a shaded column labelled planned only holds start dates after it. Under the row, the share of that year's studies registering it, for each year with a study of this class. Open the table below for every number. 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 2020 2021 2022 2023 2024 2025 2026 year not yet over Studies 1 2 1 1 1 1 1 1 1 1 2 3 2 3 1 1 Share of that year's studiesregistering it 5% 4% 2% 2% 2% 2% 2% 1% 2% 2% 4% 7% 5% 8% 4% 4%
CFQ-R: studies by start year One row: this class's studies by start year, in the same columns as Figure 1 on the atlas's front page. Columns are study start years, 1993 to 2026. Each lit circle is a count of studies, with the number printed under it. A hatched column labelled year not yet over holds the date the registry processed the data; a shaded column labelled planned only holds start dates after it. Under the row, the share of that year's studies registering it, for each year with a study of this class. Open the table below for every number. 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 2020 2021 2022 2023 2024 2025 2026 year not yet over Studies 1 2 1 1 1 1 1 1 1 1 2 3 2 3 1 1 Share of that year's studiesregistering it 5% 4% 2% 2% 2% 2% 2% 1% 2% 2% 4% 7% 5% 8% 4% 4%
Table of the numbers
CFQ-R: studies by start year
Start yearStudiesActual startPlanned startDate, type not recordedShare of that year's studies registering it
200510015%
200820024%
201010012%
201210012%
201310012%
201411002%
201510012%
201611001%
201711002%
201911002%
202022004%
202232107%
202321105%
202433008%
202511004%
2026 (year to the snapshot date)10104%

A study with a start date is in exactly one of the actual, planned and type-not-recorded columns; a study with no start date is in none of them. A year marked year to the snapshot date is incomplete: it is counted only up to the date the registry processed the data, ; a later year holds planned starts only. The share column divides this class's studies that started that year by all studies in scope that started that year (the denominator, each study counted once): a whole-number percentage, or k of n when the year has fewer than 5 studies. A larger share does not make a measure better; it shows how often trials registered it.

By trial phase

CFQ-R: studies by phase
PhaseStudies
Phase 22
Phase 34
Phase 41
NA16

By the year the study was first posted

CFQ-R: studies by first-posted year
First postedStudies
20051
20082
20101
20122
20142
20193
20211
20223
20233
20242
20253

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 (last updated )
Changes the lab made
  1. 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.
  2. 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).
  3. Start dates without a recorded date type are counted as their own kind; no type is assumed.
  4. No registry wording was clipped by these tools; any clipping on a published page must be added to this list.
  5. Registry pages were re-saved as UTF-8 JSON after parsing; values and key order are kept, whitespace is not.
  6. This page and its downloads show counts only: no registry wording, trial ids or sponsor names.
  7. Start years are also grouped into five-year periods for narrow screens; the yearly counts are in the downloads.
  8. 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.

Not affiliated with the Cystic Fibrosis Foundation or with ClinicalTrials.gov. This is an independent lab. Its work is research, not medical advice.

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.