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Dataset: Emergence and Evolution of Social Self-management of Parkinson's Disease ()

Basic Information
Dataset Full Name Emergence and Evolution of Social Self-management of Parkinson's Disease
Dataset Acronym

The Emergence and Evolution of Social Self-Management of Parkinson's Disease study (SocM-PD) is a mixed-method (quantitative-qualitative) prospective cohort study of how people with Parkinson's disease and their primary caregiver (as available) naturalistically manage chronic disease, wellness and social life in their home and community.

This longitudinal study is focused on social self-management. Social self-management is defined as the practices and experiences that ensure personal social comfort while supporting mental and physical well-being. Parkinson's Disease offers a model for studying the effect of physical disease on the social self-management of daily life when physical symptoms affect fundamental social capacities. The study's objective is to understand the emergence and evolution of the trajectories of the self-management of the social lives of people living with Parkinson's disease. The central hypothesis is that expressive capacity predicts systematic change in the pattern of social self-management and quality of life outcomes.

The specific aims of the study are to: 1) characterize social self-management trajectories over the 3 year period; 2) estimate the degree to which expressive nonverbal capacity predicts the trajectory; and 3) determine the moderating effect of gender on the association between expressive capacity and change in social self-management.

Key Terms

Mixed methods, Cohort, Chronic disease, Chronic disease management, Social life, Social contact, Social interactions, Social self-management, Social networks, Quality of life,  Expressive capacity, Caregivers, Health behavior, Health care

Study Design Longitudinal
Data Type(s) Clinical
Sponsoring Agency/Entity

Department of Health and Human Services (HHS),

National Institutes of Health (NIH)

Health Conditions/Disability Measures
Health Condition(s)

Parkinson's disease (PD), Depression (Geriatric Depression Scale), 

Disability Measures

Functional limitations (ADLs and/or IADLs), Communication impairment, Cognitive disability- Montreal Cognitive Assessment (MoCA), Caregiver assistance need

Study measures included the following components of the International Classification of Functioning, Disability and Health: Activities and participation, Body function, and Environment. 

Measures/Outcomes of Interest

Employment, Income, Education, Employment, Social support, Social interaction, Social isolation, Social participation, Management of social activities; Social networks, Social comfort, Health, Well-being, Caregiving, Expressive nonverbal capacity, Medication

Sample Population

Persons with Parkinson's disease and their care partners in the Greater Boston Metropolitan Area and New England, United States.

Sample Size/Notes

139 participants total 

(Includes 86 Persons with Parkinson's disease and 53 of their participating caregivers)

Unit of Observation

Individual/Patient and caregivers


North America


United States

Geographic Coverage

New England states: Vermont, Massachusetts, Maine, Connecticut New Hampshire

Geographic Specificity


Data Collection
Data Collection Mode

Clinical observations and surveys

Years Collected


Data Collection Frequency

Baseline with seven in-person assessments occurring approximately every 6 months. An additional telephone call was made between the assessments.

Strengths and Limitations

Well constructed study containing a wide variety of data collected consistently including detailed assessments, health events, and life events history. Low participant attrition over time. 

Researchers can analyze public use data online:


Includes the following scales:

  • Montreal Cognitive Assessment (MoCA)
  • Geriatric Depression Scale (GDS)
  • Activity Card Sort (ACS)
  • Chronic Illness Resource Survey (modified) (CIRS)
  • Social Isolation domain, Nottingham Health Profile (NHP)
  • Positive Social Interaction items, Medical Outcome Study: Social Support Survey (MOS)
  • Stigma Scale for Chronic Illness (SSCI)
  • Short Form (version 2) Health Survey (SF-12v2)
  • Parkinson's Disease Questionnaire (PDQ-39)
  • 8 item form of Parkinson's Disease Questionnaire-39 (PDQ-8)
  • Movement Disorder Society--Unified Parkinson's Disease Rating Scales (MDS-UPDRS)
  • Positive Social Interaction subscale items of the Medical Outcomes Study

Qualitative data are not available as part of data collection at this time

Not all caregivers participated. 

Data Details
Primary Website


Data Access

Both public use and a restricted use datasets are available.

Data Access Requirements
  • Public use data access requires completion of ICPSR agreement form.
  • To obtain the restricted file, researchers must agree to the terms and conditions of a Restricted Data Use Agreement in accordance with existing ICPSR servicing policies.
Summary Tables/Reports

Variables interface provides basic frequencies:       https://www.icpsr.umich.edu/web/ADDEP/studies/37631/variables 

Online analysis available based on public use data:


Data Components

15 datasets altogether, each available in two versions: a public use dataset and a restricted dataset

  • Screen and Baseline Assessment 
  • Telephone 1 Assessment 
  • Telephone 2 Assessment 
  • Telephone 3 Assessment 
  • Home Visit Assessment 
  • Telephone 4 Assessment 
  • Telephone 5 Assessment 
  • Telephone 6 Assessment 
  • Telephone 7 Assessment 
  • Alternative Assessment 
  • Two and a Half Year Assessment 
  • Six Month Assessment 
  • One Year Assessment 
  • Two Year Assessment
  • Three Year Assessment 
Selected Papers
Other Papers

Emergence and evolution of social self-management of Parkinson’s disease: study protocol for a 3-year prospective cohort study


Profile of social self-management practices in daily life with Parkinson's disease is associated with symptom severity and health quality of life. Disabil Rehabil. 2020 Apr 1:1-13. doi: 10.1080/09638288.2020.1741035



Codebooks and questionnaires available here:


Related Repositories

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The Rehabilitation Research Cross-dataset Variable Catalog has been developed through the Center for Large Data Research & Data Sharing in Rehabilitation (CLDR). The Center for Large Data Research and Data Sharing in Rehabilitation involves a consortium of investigators from the University of Texas Medical Branch, Cornell University's Yang Tan Institute (YTI), and the University of Michigan. The CLDR is funded by NIH - National Institute of Child Health and Human Development, through the National Center for Medical Rehabilitation Research, the National Institute for Neurological Disorders and Stroke, and the National Institute of Biomedical Imaging and Bioengineering. (P2CHD065702).

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Acknowledgements: This tool was developed through the efforts of William Erickson and Arun Karpur, and web designers Jason Criss and Jeff Trondsen at Cornell University. Many thanks to graduate students Kyoung Jo Oh and Yeong Joon Yoon who developed much of the content used in this tool.

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