Online Learning Module to Advance Research Related to People With Disabilities

NCT07220837 | Recruiting

• 2 other identifiers: 2025-171521UM1TR004400
• Study Type: interventional
• Target: 200
• Locations: 1 country
• Sites: 1

Brief Summary

This study will measure the effects of a brief one-time eLearning intervention on researcher Knowledge, Attitudes, and Perceptions (KAP) of including people with disabilities (PWDs) in biomedical \& behavioral research. Researchers will be recruited from across the Einstein/Montefiore network, and other medical centers with a focus on CTSAs.

Conditions

Developmental Disability; Intellectual Disability; Disability

Keywords

Bias; Attitudes; Perceptions; Inclusion; Translational Science; Representation

Outcome Measures

Primary Outcomes (1)

• Change in Attitudes Towards Disability Scale

  16 item scale - Attitudes to disability scale (ADS). Scoring range on a 5-point Likert scale ranging from 1-5, yielding an overall possible scoring range of 16-80. Participants for whom a single item is inapplicable (i.e., N/A) will have data removed for that item. Lower scores indicate less favorable attitudes towards people with disabilities, while higher scores indicate more favorable attitudes. \*Note: Questions 1-6 \& 11-16 are reverse coded.

  Pre-intervention at baseline and 3-4 weeks post intervention

Secondary Outcomes (2)

• Change in Knowledge Scores

  Pre-intervention at baseline and 3-4 weeks post intervention

• Change in Perception Scores

  Pre-intervention at baseline, and 3-4 weeks post intervention

Study Arms (2)

eLearning module

EXPERIMENTAL

Participants (n=100) will view one interactive 30-minute module aimed at increasing KAP of including PWDs in research.

Other: eLearning module

Control

OTHER

Participants (n=100) will view two 15-min modules (total\~30 mins) one focusing on disability data sources and the other on the medical/social model of disability. Participants will retake the KAP survey again immediately after completing the 2 modules.

Other: Control

Interventions

eLearning module OTHER

* Baseline pre-survey (15 minutes) * Baseline learning module (30 minutes) * Baseline post-survey (10 minutes) * Follow-up survey (3-4 weeks later) Components of KAP survey: Demographics-research experience/role, disability status, exposure to PWDs, etc. (baseline pre-survey only; e.g. not asked at post follow-up survey) Knowledge-short-answer, clinical scenarios, items focused on historical/legislative context, etc. Attitudes-validated "Attitudes to Disability Scale" (ADS) developed by a World Health Organization (WHO) working group Perceptions-questions developed by Prosci's Awareness, Desire, Knowledge, Ability, Reinforcement (ADKAR) framework.

eLearning module

Control OTHER

Disability Statistics Training (University of New Hampshire Link). Modules identify disability data sources via US surveys and measurement hurdles in disability research: A) Module 2/Topic 1 (13m:44s): Operationalization of Disability in Surveys- covers the two common operationalization methods, the 6 Question Sequence (6QS) and the Washington Group Short Set (WGSS), and the challenges of collecting disability data B) Module 3/Topic 1 (13m:48s): Disablement Models- conceptually defines models, such as Nagi's Disablement Model, Work Disability, Verbrugge and Jette, and WHO's Definition.

Also known as: Disability Statistics Training

Control

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• Aged \>=18
• Conducts non-disability focused research (in the past 3 years)
• Conducts (primarily) research with/on adults
• Agree to complete the 1-hour baseline session in one sitting

You may not qualify if:

• Participant in Aim1/Aim2 of D2/R3 study.

Sponsors & Collaborators

• Albert Einstein College of Medicine: lead
• National Center for Advancing Translational Sciences (NCATS): collaborator

Study Sites (1)

Albert Einstein College of Medicine

The Bronx, New York, 10461, United States

RECRUITING

Related Publications (15)

• Centers for Disease Control and Prevention. Disability and Health Data System (DHDS). In:2023.

  BACKGROUND

• Granjon M, Pillaud N, Popa-Roch M, Aubé B, Rohmer O. Attitudes towards invisible disabilities: Evidence from behavioral tendencies. Current Research in Behavioral Sciences. 2025;8:100164.

  BACKGROUND

• Bonuck K, Fishman A. Reducing translational science roadblocks to disability research. J Clin Transl Sci. 2025 Jun 9;9(1):e174. doi: 10.1017/cts.2025.10073. eCollection 2025.

  PMID: 40979104 BACKGROUND

• Havercamp SM, Krahn GL, Larson SA, Fujiura G, Goode TD, Kornblau BL; National Health Surveillance for IDD Workgroup. Identifying People With Intellectual and Developmental Disabilities in National Population Surveys. Intellect Dev Disabil. 2019 Oct;57(5):376-389. doi: 10.1352/1934-9556-57.5.376.

  PMID: 31568737 BACKGROUND

• Schieve LA, Gonzalez V, Boulet SL, Visser SN, Rice CE, Van Naarden Braun K, Boyle CA. Concurrent medical conditions and health care use and needs among children with learning and behavioral developmental disabilities, National Health Interview Survey, 2006-2010. Res Dev Disabil. 2012 Mar-Apr;33(2):467-76. doi: 10.1016/j.ridd.2011.10.008. Epub 2011 Nov 24.

  PMID: 22119694 BACKGROUND

• Maenner MJ, Shaw KA, Bakian AV, Bilder DA, Durkin MS, Esler A, Furnier SM, Hallas L, Hall-Lande J, Hudson A, Hughes MM, Patrick M, Pierce K, Poynter JN, Salinas A, Shenouda J, Vehorn A, Warren Z, Constantino JN, DiRienzo M, Fitzgerald RT, Grzybowski A, Spivey MH, Pettygrove S, Zahorodny W, Ali A, Andrews JG, Baroud T, Gutierrez J, Hewitt A, Lee LC, Lopez M, Mancilla KC, McArthur D, Schwenk YD, Washington A, Williams S, Cogswell ME. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2018. MMWR Surveill Summ. 2021 Dec 3;70(11):1-16. doi: 10.15585/mmwr.ss7011a1.

  PMID: 34855725 BACKGROUND

• Zablotsky B, Black LI, Maenner MJ, Schieve LA, Danielson ML, Bitsko RH, Blumberg SJ, Kogan MD, Boyle CA. Prevalence and Trends of Developmental Disabilities among Children in the United States: 2009-2017. Pediatrics. 2019 Oct;144(4):e20190811. doi: 10.1542/peds.2019-0811.

  PMID: 31558576 BACKGROUND

• Karpur A, Vasudevan V, Shih A, Frazier T. Brief Report: Impact of COVID-19 in Individuals with Autism Spectrum Disorders: Analysis of a National Private Claims Insurance Database. J Autism Dev Disord. 2022 May;52(5):2350-2356. doi: 10.1007/s10803-021-05100-x. Epub 2021 May 26.

  PMID: 34041682 BACKGROUND

• McDermott S, Royer J, Cope T, Lindgren S, Momany E, Lee JC, McDuffie MJ, Lauer E, Kurtz S, Armour BS. Using Medicaid Data to Characterize Persons With Intellectual and Developmental Disabilities in Five U.S. States. Am J Intellect Dev Disabil. 2018 Jul;123(4):371-381. doi: 10.1352/1944-7558-123.4.371.

  PMID: 29949427 BACKGROUND

• Fujiura GT, Li H, Magana S. Health Services Use and Costs for Americans With Intellectual and Developmental Disabilities: A National Analysis. Intellect Dev Disabil. 2018 Apr;56(2):101-118. doi: 10.1352/1934-9556-56.2.101.

  PMID: 29584559 BACKGROUND

• Barth S LS, Simmons T,. Medicaid Services for People with Intellectual or Developmental Disabilities - Evolution of Addressing Service Needs and Preferences 2020.

  BACKGROUND

• Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Disability. Disability and Health Data System (DHDS) Data . Centers for Disease Control and Prevention; 2021.

  BACKGROUND

• Rios D, Magasi S, Novak C, Harniss M. Conducting Accessible Research: Including People With Disabilities in Public Health, Epidemiological, and Outcomes Studies. Am J Public Health. 2016 Dec;106(12):2137-2144. doi: 10.2105/AJPH.2016.303448. Epub 2016 Oct 13.

  PMID: 27736212 BACKGROUND

• National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Population Health and Public Health Practice; Committee on Community-Based Solutions to Promote Health Equity in the United States; Baciu A, Negussie Y, Geller A, Weinstein JN, editors. Communities in Action: Pathways to Health Equity. Washington (DC): National Academies Press (US); 2017 Jan 11. Available from http://www.ncbi.nlm.nih.gov/books/NBK425848/

  PMID: 28418632 BACKGROUND

• Swenor B, Deal JA. Disability Inclusion as a Key Component of Research Study Diversity. N Engl J Med. 2022 Jan 20;386(3):205-207. doi: 10.1056/NEJMp2115475. Epub 2022 Jan 15. No abstract available.

  PMID: 35029848 BACKGROUND

Related Links

• Eunice Kennedy Shriver National Institute of Child Health and Human Development. A to Z Fact sheets: intellectual and developmental disabilities (IDDs)
• National Institute of Health. (2023, September 26). NIH designates people with disabilities as a population with health disparities. News Releases
• Centers for Disease Control and Prevention. (2015, April 14). Disability Impacts All of Us Infographic. CDC Disability and Health.

MeSH Terms

Conditions

Developmental Disabilities; Intellectual Disability; Behavior

Condition Hierarchy (Ancestors)

Neurodevelopmental Disorders; Mental Disorders; Neurobehavioral Manifestations; Neurologic Manifestations; Nervous System Diseases; Signs and Symptoms; Pathological Conditions, Signs and Symptoms

Study Officials

• Karen Bonuck, PhD

  Albert Einstein College of Medicine

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Patrick George, MSSR

CONTACT

347-961-2164; patrick.georgeiii@einsteinmed.edu

Karen Bonuck, PhD

CONTACT

201-803-3719; karen.bonuck@einsteinmed.edu

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: RANDOMIZED
• Masking: SINGLE
• Who Masked: PARTICIPANT
• Purpose: OTHER
• Intervention Model: PARALLEL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Model Details: Parallel Assignment RCT with block randomization by research team role within each arm: * n=65 Principal or Co-investigators * n=35 other study personnel (i.e. coordinator, interventionist, etc.) Participating researchers (n=200) will be randomly assigned to either of 2 arms (i.e. Experimental- eLearning module or Control- module on disability data sources). Participants will begin their respective intervention modules after completing the baseline KAP survey.

Study Record Dates

• First Submitted: September 18, 2025
• First Posted: October 24, 2025
• Study Start: December 16, 2025
• Primary Completion: February 1, 2026
• Study Completion: February 1, 2026
• Last Updated: January 2, 2026

Record last verified: 2025-12

Data Sharing

• IPD Sharing: Will share
• Shared Documents: STUDY PROTOCOL, ICF, ANALYTIC CODE
• Time Frame: De-identified survey data will be exported from Einstein-Montefiore's REDCap database into a common and open format (e.g., .CSV with variable labels). The survey will have previously been made publicly available in a peer review manuscript including information about our research process, details of the data analysis plan, protocols, etc. All dataset(s) that can be shared will be deposited into the Harvard Dataverse Repository (HDR).
• Access Criteria: Prior to sharing we will remove all personal identifiers. Survey data will be made available in csv. and will not require specialized tools to gain access or be manipulated (i.e. no restrictions). Resources (e.g. code) will be made publicly available through the HDR.

Locations

US (1)