cometadata/datacite-titles-descriptions-related-identifiers huggingface dataset:
DOI: 10.3886/icpsr39636.v1
title: Design and Methodological Improvements for Patient-Centered Small n Sequential Multiple Assignment Randomized Trials (snSMARTs) in the Setting of Rare Diseases [Methods Study], 2016-2020
title: Version 1

description: A rare disease is one that affects fewer than 200,000 people in the United States. Because few people have these diseases, clinical studies on treatments can be hard to conduct. One way to study rare disease treatments is with an snSMART study.
snSMART studies have two stages. In the first stage, researchers assign patients to a treatment by chance. In the second stage, patients may stay with the same treatment or switch treatments. Patients stay on the same treatment if it's working well. If the treatment isn't working, researchers assign patients by chance to a new treatment.
snSMARTs can help researchers learn more from a smaller number of patients than a standard clinical study. But most current methods for analyzing snSMARTs use data only from the first stage, which can lead to inefficient results.
In this project, the research team developed and tested new methods that use data from both stages to analyze snSMARTs. The team compared results from the new methods to actual treatment effectiveness to see Bias, or whether results are too high or too low effficiency, or how big the difference is between the results and actual treatment effectiveness
 To access the software, please visit the snSMART Sample Size App.
description: To develop new methods for designing and analyzing snSMARTs that increase efficiency and have low bias
description: Using data from both stages of a snSMART studying three treatments, researchers developed two models:

Bayesian joint stage model (BJSM)
Log Poisson joint stage model (LPJSM)

The models estimate the best first stage treatment based on response rates or the percentage of patients who responded to each of three treatments, from both stages. Researchers compared simulation estimates from the new models with two models that relied on data from only the first stage:

Bayesian first stage model (BFSM)
First stage maximum likelihood estimates (FSMLE)

To estimate response rates for treatment sequences, researchers extended the new models to allow for the second stage treatment effect to depend on the first stage treatment

BJSM with multiple linkage parameters (BJSMM)
LPJSM with multiple parameters (LPJSMM)
To identify the optimal treatment sequence, researchers compared BJSMM and LPJSMM with an existing method, weighted and replicated regression method (WRRM).

Clinicians who treat rare disease, one patient with a rare disease, and one family member gave input on the study.
description: Datasets: 
DS1: Design and Methodological Improvements for Patient-Centered Small n Sequential Multiple Assignment Randomized Trials (snSMARTs) in the Setting of Rare Diseases [Methods Study], 2016-2020
description: Simulated data.
DOI: 10.21233/045t-9g22
title: Brodnicki Natural Park pollen trap dataset

description: Raw data for the Brodnicki Natural Park pollen trap dataset submitted to the Neotoma Paleoecology Database. Data is available through the landing page in JSON format. The landing page referenced by the DOI also contains links to publications and a map-based viewer for the dataset. The Neotoma Paleoecology Database maintains a homepage at https://www.neotomadb.org.
DOI: 10.25574/14354
title: Chandra X-ray Observatory ObsId 14354

description: CHANDRA EXPLORATION OF THE COSMIC MELTING POT IN THE VIRIALIZATION REGION OF A RICH GALAXY CLUSTER
DOI: 10.25574/14355
title: Chandra X-ray Observatory ObsId 14355

description: A Chandra Study of the Large-Scale Shock Front in Abell 2219
DOI: 10.25574/14356
title: Chandra X-ray Observatory ObsId 14356

description: A Chandra Study of the Large-Scale Shock Front in Abell 2219
DOI: 10.17026/dans-x8u-nu8p
title: PAN-00134843 - terra sigillata plate type Drag. 31

description: &lt;p&gt;This find is registered at Portable Antiquities of the Netherlands with number PAN-00134843&lt;/p&gt;
description: Modified: 2025-09-11T20:33:32+02:00
DOI: 10.25574/14357
title: Chandra X-ray Observatory ObsId 14357

description: Variability and particle acceleration in the jet of Pictor A
DOI: 10.21233/7th6-0z10
title: Brodnicki Natural Park pollen trap dataset

description: Raw data for the Brodnicki Natural Park pollen trap dataset submitted to the Neotoma Paleoecology Database. Data is available through the landing page in JSON format. The landing page referenced by the DOI also contains links to publications and a map-based viewer for the dataset. The Neotoma Paleoecology Database maintains a homepage at https://www.neotomadb.org.
DOI: 10.25574/14358
title: Chandra X-ray Observatory ObsId 14358

description: Particle Acceleration at a Strong Shock - A Deep Chandra Observation of NGC 4552
DOI: 10.3886/icpsr39626
title: Engaging Patients and Caregivers Managing Rare Diseases to Improve the Methods of Clinical Guideline Development [Methods Study], United States, 2016-2020
title: Archival Version

description: Clinical practice guidelines help doctors decide on treatments to recommend for their patients. Guidelines are based on research that looks at the benefits and harms of different treatments. Patient and caregiver input can improve the usefulness of guidelines. But guideline developers often rely on the input of only a few patients and caregivers.
In this study, the research team created a process for getting feedback on guidelines from larger groups of patients and caregivers. This process is called the RAND/PPMD Patient-Centeredness Method, or RPM. The team tested RPM with guidelines for Duchenne muscular dystrophy, or DMD. DMD is a severe form of muscle loss that mostly affects young boys.
description: To develop and test a scalable process for systematically eliciting patient and caregiver input on clinical practice guidelines.
description: This mixed-methods study developed an online modified-Delphi approach for eliciting feedback on clinical practice guidelines from large numbers of patients and caregivers, called the RAND/PPMD Patient-Centeredness Method (RPM). Researchers tested RPM by asking patients with Duchenne muscular dystrophy (DMD) and their caregivers to rate the patient-centeredness, which the researchers operationalized as importance and acceptability, of recommendations for the management of DMD included in the 2018 DMD care considerations.
Researchers recruited 24 patients and 71 caregivers from the Duchenne Registry to provide input. Participants were randomly assigned to one of two panels. In round one, participants in each panel used nine-point Likert scales to rate the importance and acceptability of 19 recommendations. Participants also explained their ratings and the factors that influenced their responses.
In round two, participants reviewed bar charts showing how their round one responses compared with the responses of other panel members and whether the panel reached consensus on each recommendation's importance and acceptability. Participants then discussed their feedback in a moderated online forum.
In round three, participants could revise their original ratings based on round two feedback and discussions.
Researchers assessed the extent to which agreement among participants on importance and acceptability ratings changed between rounds one and three, the replicability between the two panels' final ratings, and the patient-centeredness of DMD care considerations, which the researchers defined as two panels agreeing that a recommendation is both important and acceptable.
Patients, caregivers, clinicians, and guideline developers helped design and provide feedback on the study.
description: Datasets: 
DS1: Engaging Patients and Caregivers Managing Rare Diseases to Improve the Methods of Clinical Guideline Development [Methods Study], United States, 2016-2020
description: Patients with Duchenne muscular dystrophy and their caregivers across the US.
DOI: 10.25574/14359
title: Chandra X-ray Observatory ObsId 14359

description: Particle Acceleration at a Strong Shock - A Deep Chandra Observation of NGC 4552
DOI: 10.3886/icpsr39626.v1
title: Engaging Patients and Caregivers Managing Rare Diseases to Improve the Methods of Clinical Guideline Development [Methods Study], United States, 2016-2020
title: Version 1

description: Clinical practice guidelines help doctors decide on treatments to recommend for their patients. Guidelines are based on research that looks at the benefits and harms of different treatments. Patient and caregiver input can improve the usefulness of guidelines. But guideline developers often rely on the input of only a few patients and caregivers.
In this study, the research team created a process for getting feedback on guidelines from larger groups of patients and caregivers. This process is called the RAND/PPMD Patient-Centeredness Method, or RPM. The team tested RPM with guidelines for Duchenne muscular dystrophy, or DMD. DMD is a severe form of muscle loss that mostly affects young boys.
description: To develop and test a scalable process for systematically eliciting patient and caregiver input on clinical practice guidelines.
description: This mixed-methods study developed an online modified-Delphi approach for eliciting feedback on clinical practice guidelines from large numbers of patients and caregivers, called the RAND/PPMD Patient-Centeredness Method (RPM). Researchers tested RPM by asking patients with Duchenne muscular dystrophy (DMD) and their caregivers to rate the patient-centeredness, which the researchers operationalized as importance and acceptability, of recommendations for the management of DMD included in the 2018 DMD care considerations.
Researchers recruited 24 patients and 71 caregivers from the Duchenne Registry to provide input. Participants were randomly assigned to one of two panels. In round one, participants in each panel used nine-point Likert scales to rate the importance and acceptability of 19 recommendations. Participants also explained their ratings and the factors that influenced their responses.
In round two, participants reviewed bar charts showing how their round one responses compared with the responses of other panel members and whether the panel reached consensus on each recommendation's importance and acceptability. Participants then discussed their feedback in a moderated online forum.
In round three, participants could revise their original ratings based on round two feedback and discussions.
Researchers assessed the extent to which agreement among participants on importance and acceptability ratings changed between rounds one and three, the replicability between the two panels' final ratings, and the patient-centeredness of DMD care considerations, which the researchers defined as two panels agreeing that a recommendation is both important and acceptable.
Patients, caregivers, clinicians, and guideline developers helped design and provide feedback on the study.
description: Datasets: 
DS1: Engaging Patients and Caregivers Managing Rare Diseases to Improve the Methods of Clinical Guideline Development [Methods Study], United States, 2016-2020
description: Patients with Duchenne muscular dystrophy and their caregivers across the US.
DOI: 10.25574/14360
title: Chandra X-ray Observatory ObsId 14360

description: Studying the physics of outbursts in the Westerlund 1 transient magnetar laboratory
DOI: 10.21233/qn6d-5x31
title: Tulskie Zaseki pollen trap dataset

description: Raw data for the Tulskie Zaseki pollen trap dataset submitted to the Neotoma Paleoecology Database. Data is available through the landing page in JSON format. The landing page referenced by the DOI also contains links to publications and a map-based viewer for the dataset. The Neotoma Paleoecology Database maintains a homepage at https://www.neotomadb.org.
DOI: 10.25574/14361
title: Chandra X-ray Observatory ObsId 14361

description: Expanding the Frontiers with Chandra: Observations of the Most Massive z&gt;0.6 Cluster of Galaxies Known
DOI: 10.25574/14363
title: Chandra X-ray Observatory ObsId 14363

description: First X-ray Observations of Four New Fermi-Associated Black-Widow Pulsars
DOI: 10.25574/14364
title: Chandra X-ray Observatory ObsId 14364

description: X-rays from Planetary Nebulae: Unveiling Binarity, Magnetic Fields, and Wind Collisions
DOI: 10.21233/kkmt-hz57
title: Tulskie Zaseki pollen trap dataset

description: Raw data for the Tulskie Zaseki pollen trap dataset submitted to the Neotoma Paleoecology Database. Data is available through the landing page in JSON format. The landing page referenced by the DOI also contains links to publications and a map-based viewer for the dataset. The Neotoma Paleoecology Database maintains a homepage at https://www.neotomadb.org.
DOI: 10.25574/14365
title: Chandra X-ray Observatory ObsId 14365

description: SEARCH FOR JET BREAKS IN LONG GRB X-RAY AFTERGLOWS
DOI: 10.25574/14366
title: Chandra X-ray Observatory ObsId 14366

description: Deep Imaging of M37, A Better Hyades
DOI: 10.25574/14367
title: Chandra X-ray Observatory ObsId 14367

description: Deep Imaging of M37, A Better Hyades
DOI: 10.25574/14368
title: Chandra X-ray Observatory ObsId 14368

description: Simultaneous Chandra - CoRoT - Spitzer Observation of the Star Forming Region NGC 2264
DOI: 10.21233/5mv7-ep40
title: Kulikovo Pole pollen trap dataset

description: Raw data for the Kulikovo Pole pollen trap dataset submitted to the Neotoma Paleoecology Database. Data is available through the landing page in JSON format. The landing page referenced by the DOI also contains links to publications and a map-based viewer for the dataset. The Neotoma Paleoecology Database maintains a homepage at https://www.neotomadb.org.
DOI: 10.25574/14369
title: Chandra X-ray Observatory ObsId 14369

description: Simultaneous Chandra - CoRoT - Spitzer Observation of the Star Forming Region NGC 2264
DOI: 10.25574/14371
title: Chandra X-ray Observatory ObsId 14371

description: Cosmology and Cluster Evolution from the 80 Most Massive Clusters in 2000 deg^2 from the South Pole Telescope Survey
DOI: 10.25574/14372
title: Chandra X-ray Observatory ObsId 14372

description: Cosmology and Cluster Evolution from the 80 Most Massive Clusters in 2000 deg^2 from the South Pole Telescope Survey
DOI: 10.21233/anw4-pc48
title: Kulikovo Pole pollen trap dataset

description: Raw data for the Kulikovo Pole pollen trap dataset submitted to the Neotoma Paleoecology Database. Data is available through the landing page in JSON format. The landing page referenced by the DOI also contains links to publications and a map-based viewer for the dataset. The Neotoma Paleoecology Database maintains a homepage at https://www.neotomadb.org.
DOI: 10.25574/14376
title: Chandra X-ray Observatory ObsId 14376

description: Chandra Astrometry of a New ULX in NGC 891
DOI: 10.25574/14378
title: Chandra X-ray Observatory ObsId 14378

description: Jets, hot spots and cocoon of the most powerful microquasar
DOI: 10.25574/14379
title: Chandra X-ray Observatory ObsId 14379

description: One of the most powerful AGN outbursts in an enigmatic cluster ?
DOI: 10.25574/14380
title: Chandra X-ray Observatory ObsId 14380

description: Cosmology and Cluster Evolution from the 80 Most Massive Clusters in 2000 deg^2 from the South Pole Telescope Survey
DOI: 10.25574/14381
title: Chandra X-ray Observatory ObsId 14381

description: The Most Accessible Quasar Feeding and Feedback Laboratory
DOI: 10.21233/19x8-bb93
title: Kulikovo Pole pollen trap dataset

description: Raw data for the Kulikovo Pole pollen trap dataset submitted to the Neotoma Paleoecology Database. Data is available through the landing page in JSON format. The landing page referenced by the DOI also contains links to publications and a map-based viewer for the dataset. The Neotoma Paleoecology Database maintains a homepage at https://www.neotomadb.org.
DOI: 10.25574/14382
title: Chandra X-ray Observatory ObsId 14382

description: Supernova PTF 11qcj: first discovery of a radio luminous Ic SN interacting with an He shell?
DOI: 10.25574/14383
title: Chandra X-ray Observatory ObsId 14383

description: A Chandra Legacy Project to Resolve the Accretion Flow of Gas Captured by a Supermassive Black Hole
DOI: 10.25574/14384
title: Chandra X-ray Observatory ObsId 14384

description: A Chandra Legacy Project to Resolve the Accretion Flow of Gas Captured by a Supermassive Black Hole
DOI: 10.21233/zbqb-ry62
title: Kulikovo Pole pollen trap dataset

description: Raw data for the Kulikovo Pole pollen trap dataset submitted to the Neotoma Paleoecology Database. Data is available through the landing page in JSON format. The landing page referenced by the DOI also contains links to publications and a map-based viewer for the dataset. The Neotoma Paleoecology Database maintains a homepage at https://www.neotomadb.org.
DOI: 10.25574/14385
title: Chandra X-ray Observatory ObsId 14385

description: Spatially-Resolved Spectroscopy of the IC443 Pulsar Wind Nebula and Environs
DOI: 10.15468/dl.j7whbq
title: Occurrence Download

description: A dataset containing 110 species occurrences available in GBIF matching the query:
{
 "and" : [
 "TaxonKey is Litopenaeus vannamei",
 "HasGeospatialIssue is false",
 "HasCoordinate is true",
 "OccurrenceStatus is Present",
 {
 "not" : {
 "BasisOfRecord" : [
 "is one of (Fossil, Living Specimen)"
 ]
 }
 },
 {
 "or" : [
 "CoordinateUncertaintyInMeters is less than 10000",
 "CoordinateUncertaintyInMeters is null"
 ]
 }
 ]
}

 The dataset includes 110 records from 15 constituent datasets; see https://api.gbif.org/v1/occurrence/download/0055405-251120083545085/datasets/export for details.
 
Data from some individual datasets included in this download may be licensed under less restrictive terms.
DOI: 10.25574/14386
title: Chandra X-ray Observatory ObsId 14386

description: Characterizing the Most Massive Clusters in the Local Universe - B
DOI: 10.25574/14387
title: Chandra X-ray Observatory ObsId 14387

description: Characterizing the Most Massive Clusters in the Local Universe - B
DOI: 10.21233/rkhv-7p71
title: Exmoor pollen trap dataset

description: Raw data for the Exmoor pollen trap dataset submitted to the Neotoma Paleoecology Database. Data is available through the landing page in JSON format. The landing page referenced by the DOI also contains links to publications and a map-based viewer for the dataset. The Neotoma Paleoecology Database maintains a homepage at https://www.neotomadb.org.
DOI: 10.25574/14388
title: Chandra X-ray Observatory ObsId 14388

description: Characterizing the Most Massive Clusters in the Local Universe - B
DOI: 10.25574/14389
title: Chandra X-ray Observatory ObsId 14389

description: Characterizing the Most Massive Clusters in the Local Universe - B
DOI: 10.25574/14390
title: Chandra X-ray Observatory ObsId 14390

description: Characterizing the Most Massive Clusters in the Local Universe - B
DOI: 10.25574/14391
title: Chandra X-ray Observatory ObsId 14391

description: The most luminous ULXs
DOI: 10.21233/487b-0p60
title: Exmoor pollen trap dataset

description: Raw data for the Exmoor pollen trap dataset submitted to the Neotoma Paleoecology Database. Data is available through the landing page in JSON format. The landing page referenced by the DOI also contains links to publications and a map-based viewer for the dataset. The Neotoma Paleoecology Database maintains a homepage at https://www.neotomadb.org.
DOI: 10.25574/14398
title: Chandra X-ray Observatory ObsId 14398

description: Supernova PTF 11qcj: first discovery of a radio luminous Ibn supernova
DOI: 10.7265/6nfs-q904
title: Local Observations from the Seasonal Ice Zone Observing Network (SIZONet), Alaska Arctic Observatory and Knowledge Hub (AAOKH), and Sea Ice for Walrus Outlook (SIWO), Version 3
DOI: 10.25574/14400
title: Chandra X-ray Observatory ObsId 14400

description: A new heavyweight champion for stellar mass BHs? XMM and Chandra investigate
DOI: 10.21233/mbv4-9k06
title: Exmoor pollen trap dataset

description: Raw data for the Exmoor pollen trap dataset submitted to the Neotoma Paleoecology Database. Data is available through the landing page in JSON format. The landing page referenced by the DOI also contains links to publications and a map-based viewer for the dataset. The Neotoma Paleoecology Database maintains a homepage at https://www.neotomadb.org.
DOI: 10.25574/14401
title: Chandra X-ray Observatory ObsId 14401

description: X-ray irradiation and evaporation of a super-Earth exoplanet
DOI: 10.25574/14402
title: Chandra X-ray Observatory ObsId 14402

description: X-ray irradiation and evaporation of a super-Earth exoplanet
DOI: 10.25574/14405
title: Chandra X-ray Observatory ObsId 14405

description: Dynamical Evolution of the Recent Jet in CH Cyg
DOI: 10.25574/14406
title: Chandra X-ray Observatory ObsId 14406

description: Examining incredible structure in the core of the Coma cluster
DOI: 10.21233/kkh2-g092
title: Exmoor pollen trap dataset

description: Raw data for the Exmoor pollen trap dataset submitted to the Neotoma Paleoecology Database. Data is available through the landing page in JSON format. The landing page referenced by the DOI also contains links to publications and a map-based viewer for the dataset. The Neotoma Paleoecology Database maintains a homepage at https://www.neotomadb.org.
DOI: 10.25574/14407
title: Chandra X-ray Observatory ObsId 14407

description: RXJ1347: Still the most X-ray luminous cluster in the Universe, but no longer so relaxed
DOI: 10.25574/14408
title: Chandra X-ray Observatory ObsId 14408

description: 4C73.18: Catching a black hole as it transitions from very bright to very dim
DOI: 10.25574/14410
title: Chandra X-ray Observatory ObsId 14410

description: Examining incredible structure in the core of the Coma cluster
DOI: 10.34740/kaggle/dsv/14184337
title: Peer-to-Peer Boliviano (BOB) Exchange Data
DOI: 10.21233/hqcz-s093
title: Exmoor pollen trap dataset

description: Raw data for the Exmoor pollen trap dataset submitted to the Neotoma Paleoecology Database. Data is available through the landing page in JSON format. The landing page referenced by the DOI also contains links to publications and a map-based viewer for the dataset. The Neotoma Paleoecology Database maintains a homepage at https://www.neotomadb.org.
DOI: 10.25574/14411
title: Chandra X-ray Observatory ObsId 14411

description: Examining incredible structure in the core of the Coma cluster
DOI: 10.25574/14412
title: Chandra X-ray Observatory ObsId 14412

description: X-ray followup of type IIP SN 2011ja
DOI: 10.17026/ar/5plybh
title: PAN-00104168 - coin/coin-related, provincie, halve duit VOC

description: &lt;p&gt;This find is registered at Portable Antiquities of the Netherlands with number PAN-00104168&lt;/p&gt;
description: Modified: 2025-07-29T09:21:53+02:00
DOI: 10.25574/14415
title: Chandra X-ray Observatory ObsId 14415

description: Examining incredible structure in the core of the Coma cluster
DOI: 10.25574/14416
title: Chandra X-ray Observatory ObsId 14416

description: Joint Chandra and HST Monitoring of the Crab Nebula
DOI: 10.21233/6tqm-ep41
title: Roztocze Guciów pollen trap dataset

description: Raw data for the Roztocze Guciów pollen trap dataset submitted to the Neotoma Paleoecology Database. Data is available through the landing page in JSON format. The landing page referenced by the DOI also contains links to publications and a map-based viewer for the dataset. The Neotoma Paleoecology Database maintains a homepage at https://www.neotomadb.org.
DOI: 10.25574/14419
title: Chandra X-ray Observatory ObsId 14419

description: A Chandra Legacy Project to Resolve the Accretion Flow of Gas Captured by a Supermassive Black Hole
DOI: 10.25574/14420
title: Chandra X-ray Observatory ObsId 14420

description: Supernova PTF 11qcj: first discovery of a radio luminous Ibn supernova
DOI: 10.25574/14421
title: Chandra X-ray Observatory ObsId 14421

description: ACIS-S observation of TWA 30AB, the second and third closest actively accreting and outflowing low-mass stars
DOI: 10.25574/14423
title: Chandra X-ray Observatory ObsId 14423

description: SN1006: SHOCK PHYSICS, COSMIC-RAY ACCELERATION, AND SN IA EXPLOSIONS