Use of a Digital Snapshot to Reduce Use of Restraints During Emergency Department Visits and Improve Experience of Care for PWIDD

NCT06986863 | Recruiting

• 1 other identifier: 25-0125
• Study Type: interventional
• Target: 1,500
• Locations: 1 country
• Sites: 1

Brief Summary

The purpose of this research study is to compare the Always Uniquely Me (AUM) mobile application to regular medical care. The investigators want to know if AUM is helpful at decreasing use of restraints and improving experience in the emergency department (ED) for people with intellectual and developmental disabilities (PWIDD). The investigators will also be looking at how certain characteristics of the PWIDD participants may affect those outcomes.

Conditions

Intellectual and Developmental Disabilities

Keywords

Intellectual and developmental disabilities; emergency department; restraint; restraint, physical; emergency department visits

Outcome Measures

Primary Outcomes (1)

• Use of physical and/or chemical restraints during ED visits

  Measured using electronic medical record data.

  12 months

Secondary Outcomes (2)

• Length of stay in the ED

  12 months

• Experience of care in hospital-based EDs

  Baseline, 6 months, 12 months

Other Outcomes (14)

• Perceptions of self and publicly enacted negativity, prejudice, and discrimination

  Baseline, 6 months, 12 months

• Perceived functional communication abilities

  Baseline, 6 months, 12 months

• Overall health status, including physical, mental, and social health

  Baseline, 6 months, 12 months

Study Arms (2)

Standard Care

NO INTERVENTION

This arm will not be given any interventions.

Always Uniquely Me (AUM) arm

EXPERIMENTAL

Participants will receive access to the Always Uniquely Me app.

Other: Always Uniquely Me mobile phone application

Interventions

Always Uniquely Me mobile phone application OTHER

The app will allow the user to organize their healthcare information and personal needs which can help improve communication with doctors, clinicians and first responders.

Always Uniquely Me (AUM) arm

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• have visited a Northwell Health Emergency Department in the last 12 months
• have a confirmed intellectual and/or developmental disability
• must be 18 years of age or older at enrollment
• have a smart phone or tablet that connects to the internet
• have a preferred language of English

Sponsors & Collaborators

• Northwell Health: lead
• Institute for Exceptional Care: collaborator

Study Sites (1)

Cohen Children's Medical Center

New Hyde Park, New York, 11040, United States

RECRUITING

Related Publications (12)

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  PMID: 15008829 BACKGROUND

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  PMID: 28921676 BACKGROUND

• Garfield S, Furniss D, Husson F, Etkind M, Williams M, Norton J, Ogunleye D, Jubraj B, Lakhdari H, Franklin BD. How can patient-held lists of medication enhance patient safety? A mixed-methods study with a focus on user experience. BMJ Qual Saf. 2020 Sep;29(9):764-773. doi: 10.1136/bmjqs-2019-010194. Epub 2020 Jan 16.

  PMID: 31949006 BACKGROUND

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  PMID: 25344333 BACKGROUND

• Iacono T, Davis R. The experiences of people with developmental disability in Emergency Departments and hospital wards. Res Dev Disabil. 2003 Jul-Aug;24(4):247-64. doi: 10.1016/s0891-4222(03)00041-6.

  PMID: 12873658 BACKGROUND

• Lin SC, Margolis B, Yu SM, Adirim TA. The role of medical home in emergency department use for children with developmental disabilities in the United States. Pediatr Emerg Care. 2014 Aug;30(8):534-9. doi: 10.1097/PEC.0000000000000184.

  PMID: 25062298 BACKGROUND

• Durbin A, Balogh R, Lin E, Wilton AS, Lunsky Y. Emergency Department Use: Common Presenting Issues and Continuity of Care for Individuals With and Without Intellectual and Developmental Disabilities. J Autism Dev Disord. 2018 Oct;48(10):3542-3550. doi: 10.1007/s10803-018-3615-9.

  PMID: 29923146 BACKGROUND

• Lauer E, Lindgren S, Momany E, Cope T, Royer J, Cogan L, McDermott S, Armour B. Health Service Utilization Patterns Among Medicaid-Insured Adults With Intellectual and Developmental Disabilities: Implications for Access Needs in Outpatient Community-Based Medical Services. J Ambul Care Manage. 2021 Apr-Jun 01;44(2):138-147. doi: 10.1097/JAC.0000000000000373.

  PMID: 33492884 BACKGROUND

Related Links

• Unity Health Toronto. Exploring the Efficacy and Usability of the My Autism Passport (MAP) App in Service Navigation for Families of Children With Autism. clinicaltrials.gov; 2020. Accessed January 16, 2023.
• Bollegala N, Lomonaco J, Colucci A, et al. A85 IMPROVING OUTCOMES IN THE PEDIATRIC TO ADULT CARE TRANSITION IN IBD (IMPACT IBD). J Can Assoc Gastroenterol. 2019;2(Supplement\_2):169-170. doi:10.1093/jcag/gwz006.084

MeSH Terms

Conditions

Developmental Disabilities; Emergencies

Condition Hierarchy (Ancestors)

Neurodevelopmental Disorders; Mental Disorders; Disease Attributes; Pathologic Processes; Pathological Conditions, Signs and Symptoms

Central Study Contacts

Sophia Jan Division Chief, MD, MSHP

CONTACT

(516) 465-4377; sjan1@northwell.edu

Caren Steinway, LMSW, MPH

CONTACT

(516) 316-2530; csteinway@northwell.edu

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: RANDOMIZED
• Masking: NONE
• Purpose: HEALTH SERVICES RESEARCH
• Intervention Model: PARALLEL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Division Chief

Study Record Dates

• First Submitted: May 15, 2025
• First Posted: May 23, 2025
• Study Start: September 24, 2025
• Primary Completion (Estimated): December 31, 2027
• Study Completion (Estimated): December 31, 2027
• Last Updated: September 30, 2025

Record last verified: 2025-06

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)