HealthMeasures Dataverse

This is a repository of data from self-reported patient assessments evaluating symptoms, well-being, and life satisfaction; physical, mental, and social health; as well as examiner-administered assessments measuring sensory, motor, and cognitive functions. Data from NIH-funded initiatives include PROMIS®, NIH Toolbox, Neuro-QoL, and ASCQ-Me.

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1 to 10 of 45 Results

PROMIS EC Wave 2 May 29, 2025 Blackwell, Courtney, 2023, "PROMIS EC Wave 2", https://doi.org/10.7910/DVN/BO7Y5M, Harvard Dataverse, V3 These data are from Wave 2 data collection for the PROMIS Early Childhood (EC) Parent Report measure development and validation study (see Cella, Blackwell, & Wakschlag, 2022 for overview). Wave 2 data were collected via Ipsos using their probability-based nationally representative online survey panel. The overall aim of Wave 2 data collection was...
PROMIS 1 American Chronic Pain Association (ACPA) Supplement Oct 11, 2024 Cella, David, 2016, "PROMIS 1 American Chronic Pain Association (ACPA) Supplement", https://doi.org/10.7910/DVN/5JAACI, Harvard Dataverse, V2 In order to increase the number of participants experiencing pain in the calibration sample, individuals with chronic pain were recruited through the American Chronic Pain Association (ACPA). An invitation to complete the PROMIS pain survey was posted on the ACPA website. To be eligible, participants had to be 21 years of age or older and have at l...
PROMIS II Restore GI Nov 16, 2022 Jackson, Kathryn L, 2022, "PROMIS II Restore GI", https://doi.org/10.7910/DVN/TOAOE8, Harvard Dataverse, V1 GI Distress: Phase III (Quantitative Psychometric Testing)
PROMIS 1 Wave 1 May 20, 2022 Cella, David, 2015, "PROMIS 1 Wave 1", https://doi.org/10.7910/DVN/0NGAKG, Harvard Dataverse, V3, UNF:6:sXYqKDzGWfX7QuTXNGpjGQ== [fileUNF] Calibration data for the majority of PROMIS item banks and short forms. From July 2006 to March 2007, data were collected from the U.S. general population and multiple disease populations. The sampling plan was developed for collecting responses to the candidate items from the targeted PROMIS domains and was designed to accommodate multiple objecti...
Evaluation of PROMIS Measures for Pediatric Inflammatory Bowel Disease (IBD) Aug 16, 2021 Forrest, Christopher, 2021, "Evaluation of PROMIS Measures for Pediatric Inflammatory Bowel Disease (IBD)", https://doi.org/10.7910/DVN/MZITNT, Harvard Dataverse, V1, UNF:6:FwAagsMszz8nJ03ETiBVng== [fileUNF] The NIH-sponsored Patient-Reported Outcomes Measurement Information System (PROMIS) network has developed 20 pediatric instruments, both child-report and parent-proxy editions. Concurrent validity evaluations of the instruments have established that they are ready for integration into clinical research. The next step is to determine the clinical va...
PROMIS Pediatric General Population Survey Aug 13, 2021 Forrest, Christopher, 2021, "PROMIS Pediatric General Population Survey", https://doi.org/10.7910/DVN/FBXOOZ, Harvard Dataverse, V1, UNF:6:0u9wOuGEFzpGacD+3SByAA== [fileUNF] The purpose of this study was to establish age-based norms for all pediatric PROMIS measures (a total of 20 measures), and to assess the concurrent validity and relative precision of 9 newly developed pediatric PROMIS measures. The GfK Group (GfK, formerly Knowledge Networks) conducted the survey in 2014 on behalf of The Children’s Hospital of Phil...
PROsetta Stone Wave 3Deaccessioned Aug 11, 2021 Cella, David, 2021, "PROsetta Stone Wave 3", https://doi.org/10.7910/DVN/E4GHLP, Harvard Dataverse, V1 The primary aim of PROsetta Stone Wave 3 was to demonstrate the feasibility of linking PROMIS Physical Function item banks developed for two different populations, post acute care patients (Activity Measure for Post-Acute Care; AM-PAC) and the US general population, to expand the range of PRO assessment options for a variety of neurological disorde...
PROMIS Pediatric General Population Survey Jul 30, 2021 - PROMIS Pediatric Dataverse Forrest, Christopher, 2020, "PROMIS Pediatric General Population Survey", https://doi.org/10.7910/DVN/UXH6DH, Harvard Dataverse, V2, UNF:6:0u9wOuGEFzpGacD+3SByAA== [fileUNF] The purpose of this study was to establish age-based norms for all pediatric PROMIS measures (a total of 20 measures), and to assess the concurrent validity and relative precision of 9 newly developed pediatric PROMIS measures. The GfK Group (GfK, formerly Knowledge Networks) conducted the survey in 2014 on behalf of The Children’s Hospital of Phil...
FACIT Dyspnea (PROMIS Dyspnea) Jul 14, 2021 Yount, Susan, 2021, "FACIT Dyspnea (PROMIS Dyspnea)", https://doi.org/10.7910/DVN/IBFK5H, Harvard Dataverse, V1, UNF:6:92iWO0lCj/LjVjEYn6rQlg== [fileUNF] Chronic Obstructive Pulmonary Disease (COPD) is the fourth major cause of death in the US with one of its major symptoms being dyspnea, or shortness of breath. Dypsnea is a subjective, multifactorial symptom that has been proven difficult to measure. The current subjective measures of dyspnea fail to meet criteria suggested for use in multi-nationa...
Enhancing PROMIS in Pediatric Pain, Rheumatology, and Rehabilitation Research Jun 30, 2021 DeWitt, Esi Morgan, 2021, "Enhancing PROMIS in Pediatric Pain, Rheumatology, and Rehabilitation Research", https://doi.org/10.7910/DVN/XX4LEG, Harvard Dataverse, V1 To evaluate the validity and responsiveness of the PROMIS pediatric item banks with longitudinal assessments in 120 children ages 8-18 with JIA. Concurrent validity will be assessed by measuring correlations between the PROMIS measures and legacy scales intended to measure the same health trait. Responsiveness of the PROMIS measures will be studied...

PROMIS EC Wave 2

May 29, 2025

Blackwell, Courtney, 2023, "PROMIS EC Wave 2", https://doi.org/10.7910/DVN/BO7Y5M, Harvard Dataverse, V3

These data are from Wave 2 data collection for the PROMIS Early Childhood (EC) Parent Report measure development and validation study (see Cella, Blackwell, & Wakschlag, 2022 for overview). Wave 2 data were collected via Ipsos using their probability-based nationally representative online survey panel. The overall aim of Wave 2 data collection was...

PROMIS 1 American Chronic Pain Association (ACPA) Supplement

Oct 11, 2024

Cella, David, 2016, "PROMIS 1 American Chronic Pain Association (ACPA) Supplement", https://doi.org/10.7910/DVN/5JAACI, Harvard Dataverse, V2

In order to increase the number of participants experiencing pain in the calibration sample, individuals with chronic pain were recruited through the American Chronic Pain Association (ACPA). An invitation to complete the PROMIS pain survey was posted on the ACPA website. To be eligible, participants had to be 21 years of age or older and have at l...

PROMIS II Restore GI

Nov 16, 2022

Jackson, Kathryn L, 2022, "PROMIS II Restore GI", https://doi.org/10.7910/DVN/TOAOE8, Harvard Dataverse, V1

GI Distress: Phase III (Quantitative Psychometric Testing)

PROMIS 1 Wave 1

May 20, 2022

Cella, David, 2015, "PROMIS 1 Wave 1", https://doi.org/10.7910/DVN/0NGAKG, Harvard Dataverse, V3, UNF:6:sXYqKDzGWfX7QuTXNGpjGQ== [fileUNF]

Calibration data for the majority of PROMIS item banks and short forms. From July 2006 to March 2007, data were collected from the U.S. general population and multiple disease populations. The sampling plan was developed for collecting responses to the candidate items from the targeted PROMIS domains and was designed to accommodate multiple objecti...

Evaluation of PROMIS Measures for Pediatric Inflammatory Bowel Disease (IBD)

Aug 16, 2021

Forrest, Christopher, 2021, "Evaluation of PROMIS Measures for Pediatric Inflammatory Bowel Disease (IBD)", https://doi.org/10.7910/DVN/MZITNT, Harvard Dataverse, V1, UNF:6:FwAagsMszz8nJ03ETiBVng== [fileUNF]

The NIH-sponsored Patient-Reported Outcomes Measurement Information System (PROMIS) network has developed 20 pediatric instruments, both child-report and parent-proxy editions. Concurrent validity evaluations of the instruments have established that they are ready for integration into clinical research. The next step is to determine the clinical va...

PROMIS Pediatric General Population Survey

Aug 13, 2021

Forrest, Christopher, 2021, "PROMIS Pediatric General Population Survey", https://doi.org/10.7910/DVN/FBXOOZ, Harvard Dataverse, V1, UNF:6:0u9wOuGEFzpGacD+3SByAA== [fileUNF]

The purpose of this study was to establish age-based norms for all pediatric PROMIS measures (a total of 20 measures), and to assess the concurrent validity and relative precision of 9 newly developed pediatric PROMIS measures. The GfK Group (GfK, formerly Knowledge Networks) conducted the survey in 2014 on behalf of The Children’s Hospital of Phil...

PROsetta Stone Wave 3Deaccessioned

Aug 11, 2021

Cella, David, 2021, "PROsetta Stone Wave 3", https://doi.org/10.7910/DVN/E4GHLP, Harvard Dataverse, V1

The primary aim of PROsetta Stone Wave 3 was to demonstrate the feasibility of linking PROMIS Physical Function item banks developed for two different populations, post acute care patients (Activity Measure for Post-Acute Care; AM-PAC) and the US general population, to expand the range of PRO assessment options for a variety of neurological disorde...

PROMIS Pediatric General Population Survey

Jul 30, 2021 - PROMIS Pediatric Dataverse

Forrest, Christopher, 2020, "PROMIS Pediatric General Population Survey", https://doi.org/10.7910/DVN/UXH6DH, Harvard Dataverse, V2, UNF:6:0u9wOuGEFzpGacD+3SByAA== [fileUNF]

FACIT Dyspnea (PROMIS Dyspnea)

Jul 14, 2021

Yount, Susan, 2021, "FACIT Dyspnea (PROMIS Dyspnea)", https://doi.org/10.7910/DVN/IBFK5H, Harvard Dataverse, V1, UNF:6:92iWO0lCj/LjVjEYn6rQlg== [fileUNF]

Chronic Obstructive Pulmonary Disease (COPD) is the fourth major cause of death in the US with one of its major symptoms being dyspnea, or shortness of breath. Dypsnea is a subjective, multifactorial symptom that has been proven difficult to measure. The current subjective measures of dyspnea fail to meet criteria suggested for use in multi-nationa...

Enhancing PROMIS in Pediatric Pain, Rheumatology, and Rehabilitation Research

Jun 30, 2021

DeWitt, Esi Morgan, 2021, "Enhancing PROMIS in Pediatric Pain, Rheumatology, and Rehabilitation Research", https://doi.org/10.7910/DVN/XX4LEG, Harvard Dataverse, V1

To evaluate the validity and responsiveness of the PROMIS pediatric item banks with longitudinal assessments in 120 children ages 8-18 with JIA. Concurrent validity will be assessed by measuring correlations between the PROMIS measures and legacy scales intended to measure the same health trait. Responsiveness of the PROMIS measures will be studied...

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