Research Studies

PARTICIPATE IN A RESEARCH STUDY!

ACTIVE RESEARCH STUDIES:

Below are the OPEN/ACTIVE research studies that we are seeking participants for. If you are interested in participating in a research study, please read the descriptions below and contact us.


COMMUNITY HEALTH STUDY

Study Length: 12 months

Clinical Trials.gov: NCT03653390

The Community Health Study investigates whether a telephone/video-based health and wellness program, called Enhance Wellness improves quality of life for adults who are 45 to 64 years old and have some level of physical disability. If you enroll in this study, you will be randomly assigned to one of three groups:

1) Enhance Wellness program: participants work with a health coach 1x month for 6 months to focus on any health or wellness goal you (participant) chooses. This goal could be anything related to wellness: increasing exercise, de-cluttering your home, doing relaxation activities, etc.. Participants and the wellness coach create an action plan for working towards the goals. All sessions take place over telephone or Zoom video and last about 45 min – 1 hour.

2) Health Education program: you work with a health coach 1x month for 6 months. Instead of working on health goals, you and the coach review health information on 8 topics that we have already selected (e.g. blood pressure, decreasing LDL cholesterol, and increasing physical activity). All sessions take place on the telephone or video call and last about 45 min – 1 hour.

3) Neither of these programs: you continue with your usual day-day activities over the 6-month period. Participants do not have any calls with a health coach. Although this group does not have any calls with a health coach, it is still a really important contribution to the research.

Eligibility Criteria

  • 45 – 64 years old (turning 65 years after screening is ok)
  • Read, write, and understand English
  • Physician’s diagnosis of a medical condition affecting the muscular or neurologic systems (e.g., Muscular Dystrophy, Multiple Sclerosis, Amputation, Spinal Cord Injury, Post-Polio Syndrome, Rheumatoid Arthritis, etc.)
  • At least occasional ADL or IADL impairment in the past 1 year
  • Able to participate via telephone or video call
  • Has 1-2 health/wellness goals if randomized to the EnhanceWellness intervention
  • Never participated in EnhanceWellness (a wellness program offered by some community centers and organizations).

Surveys

All three groups complete surveys at 4 different time points: Baseline, 3 months, 6 months, and at 12 months. Each survey time point takes about 30-40 minutes. Surveys can be completed online, on paper, or on the telephone with a study assistant. You will receive a $25 check for completing each time point ($100 in total for all four time points).

GPS Sub-Study

One of the objectives of the Community Health Study is to assess whether the EnhanceWellness program leads to changes in an individual’s participation in the community. To measure a participant’s activity in the community, we will invite about half the study participants to wear a GPS tracking device for 2 weeks at 2 different times in this study (when they start the study and 12 months later). People in this sub-study will also be asked to keep a diary of all the places they have visited over the 2 weeks. Participants will be told to go about their daily routine as they normally would. Individuals don’t have to participate in the GPS sub-study to participate in the wellness study. If they do participate in the GPS sub-study, they will receive $5 for each day they complete or up to $70 for 2 weeks. They will also receive up to $70 for completing the GPS sub-study again 12 months later.

GENERAL RESEARCH INFORMATION:
– You can stop participating any time you want. If something stressful comes up in your life, and you need to end the study early, that is completely fine.
– If you are already seeing a mental professional or want to start seeing a mental health professional outside of the research study while you are participating in the study, that is completely fine.
– We keep all data and survey responses private and confidential. We do this by storing the data in a secure database, and we use a study ID number on your survey instead of your name. Identifying information (such as name, contact information) are kept in a secured location, separate from your surveys.

CONTACT US: 1-866-928-2114 or communityhealthstudy@uw.edu


COPING & ADJUSTING TO LIVING WITH MS (CALMS) STUDY

Study Length: 6 months

Clinical Trials.gov: NCT04300816

The Coping and Adjusting to Living with MS (CALMS) study is a telephone/video-call based study for adults that have received an MS diagnosis within the past 3 years. We are taking the gold-standard psychotherapy, Cognitive Behavioral Therapy, and trying to better tailor it to improve quality of life for adults that are living with a recent MS diagnosis (i.e. diagnosed within the past 3 years).

STUDY GROUPS
All eligible participants are randomly assigned to one of three groups:
– Cognitive Behavioral Therapy Groups 1 & 2: Groups 1 & 2 have slight differences between them (one is the traditional form of CBT and one is the tailored form), but both groups will work with a counselor (trained social worker) 1x per week for 7 weeks. ALL SESSIONS TAKE PLACE OVER THE TELEPHONE OR VIDEO CALL. If you are randomized to one of the CBT groups, you get to choose whether you want to do telephone or video calls. Each counseling session lasts about 45 min-1 hour.

– Group 3: If you are selected for the third group (neither of the CBT programs), then you will continue with your life as usual (no calls with a counselor). Although this group does not have any calls with a counselor, it is still a really important contribution to the research.

SURVEYS
All three groups complete surveys at 4 different time points over the 6-months:
– Baseline (the beginning of the study)
– 1 month into the study
– 3 months into the study
– 6 months into the study (the end of the study)

Each set of surveys takes about 30-40 minutes to complete, and we pay you $25 via mailed check after each survey ($100 total). You can complete the surveys online (email link), on paper, or over the telephone with a staff member.

ONLINE GAMES
You also complete two online games that each last about 5-10 minutes. We email you a link to the games in the same email as the surveys. We pay you $25 each time you complete the online games, which happen three times in the study ($75 total):
– Baseline (the beginning of the study)
– 3 months into the study
– 6 months into the study (the end of the study)

GENERAL RESEARCH INFORMATION:
– You can stop participating any time you want. If something stressful comes up in your life, and you need to end the study early, that is completely fine.
– If you are already seeing a mental professional or want to start seeing a mental health professional outside of the research study while you are participating in the study, that is completely fine.
– We keep all data and survey responses private and confidential. We do this by storing the data in a secure database, and we use a study ID number on your survey instead of your name. Identifying information (such as name, contact information) are kept in a secured location, separate from your surveys.
– We unfortunately do not have the capacity to provide individualized results for the surveys you complete. Everyone’s survey responses are grouped together in a large data set so we can see whether these CBT programs are helping people. This is the main way that research differs from going to your physician for individual tests/results.

CONTACT US: 1-866-928-2114 or calms@uw.edu


Previous Research Studies

Below are completed/previous research studies that our lab conducted or participated in.

The Impact of Sleep Quality on Symptoms, Cognition, and Functioning in SCI

Principal Investigator: Noelle Carlozzi, PhD, Associate Professor, University of Michigan

Funder: Craig Neilsen Foundation

Dates: 2017-2020

Summary: Sleep problems, including greater difficulty falling asleep, more frequent awakenings, less satisfying sleep (non-restorative or unrefreshed sleep), and poorer sleep quality, are common in individuals with spinal cord injury (SCI). Unfortunately, very little is known about how sleep influences, and is influenced by fatigue and pain, thinking and memory, and social functioning in these individuals. For example, does poor sleep lead to more pain the following day? Or, does increased pain lead to poor sleep? Understanding these relationships can help us improve sleep and overall quality of life for people with SCI. In order to better understand these relationships we recruited N = 175 individuals with SCI in this study.

Study participants wore a device on their wrist (similar to a wristwatch) that continually monitored sleep and physical activity. In addition, participants answered questions about fatigue and pain, throughout the day for seven days. Furthermore, they completed a brief survey each night for seven days that asked about sleep, pain, mood, and social activities. At the end of the study, participants completed several tests of thinking and memory. Ultimately, this work will help inform the development of more efficient, effective, and individualized treatments for improving sleep and overall functioning of individuals with SCI.

Utilizing Existing Community Interventions and Infrastructure to Promote Healthy Aging in Persons with Long-Term Physical Disabilities (Enhance Wellness Pilot Study)

Principal Investigator: Ivan Molton, PhD, Associate Professor, University of Washington

Funder: National Institute for Disability Rehabilitation Research, Department of Education

Dates: 2013 – 2018

Summary: The purpose of this study is to test and validate an already developed and implemented community intervention for seniors (Project Enhance) for use in persons aging with a long-term physical disability.  Specifically, we will test the intervention in adults with a diagnosis of multiple sclerosis (MS), muscular dystrophy (MD), post-polio syndrome (PPS) or spinal cord injury (SCI) and who are 45 years of age or older.  Project Enhance is an evidence-based community intervention that is already administered in King County through Senior Services.  The goal of the program is to motivate participants to make and maintain a health-related behavior change of their choice.  Participants work with a “wellness coach” who provides information and community referrals to help participants meet their own health-related behavior goals.  This application is therefore for a study aimed to validate this already established intervention that is currently offered in King County.

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