Other Research Opportunities

The following studies are provided as a community service for individuals who may be interested in additional study opportunities.  NERSCIC is not involved in the design or implementation of these studies.

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Online Survey for Mothers with Physical or Mobility Disabilities
UMass Medical School would like to learn about the health care experiences of mothers with physical or mobility disabilities during pregnancy. To find out if you are eligible, go to the survey website and answer a few brief screening questions: http://survey.umassmed.edu/moms_disabilities. If you prefer to complete the survey over the phone, please call 1-888-368-7157 to speak to the research staff. (UMMS IRB ID: H00001202)

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Una Encuesta en Línea para Madres con Discapacidades Físicas o de Movilidad

Facultad de Medicina de UMass (UMass Medical School) desea aprender sobre las experiencias de atención médica de madres con discapacidades físicas o de movilidad durante el embarazo. Para averiguar si usted es elegible, vaya al sitio web de la encuesta y responda unas breves preguntas de selección: http://survey.umassmed.edu/moms_disabilities. Si prefiere completar la encuesta por teléfono, por favor llame al 1-888-368-7157 para hablar con el personal de la investigación. (UMMS IRB ID: H00001202)

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Behavioral Health or Physical Disability and Healthcare
The Disability Policy Consortium is holding confidential interviews about patients’ healthcare.  If you have a behavioral health condition or physical disability, are enrolled in the One Care Program, are between the ages of 21-65, and are interested in participating, please contact Kimberley Warsett at kwarsett@gmail.com or call 617-307-7374.  Eligible participants will be paid for their time and transportation.

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Reproductive Healthcare Needs of Women with Physical Disabilities
Researchers in the OB/GYN department at Boston Medical Center are interested in hearing the opinions, stories, and experiences of women aged 18 or older with physical disabilities who have received women’s health care.  Female participants will be asked open ended questions related to their experiences in women’s health clinics.  Interviews will last 30-45 minutes and compensation will be provided.  Interested individuals should contact Jessica McClusky at jessica.mcclusky@bmc.org or at 617-414-2770.

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Pain and SCI
The Translational Pain Research Group at the Brigham and Women’s Hospital is seeking individuals with pain as a result of spinal cord injury to participate in a research study. Interested individuals who are between the ages of 18 and 25, in good physical health, and have had pain for at least three months should call 617-525-7246 (PAIN) or email PainTrials@partners.org.  Qualified volunteers will be reimbursed for their time and the cost of travel to and from BWH.

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Exercise Study for People with SCI
Investigators from the Spaulding Rehabilitation Hospital are conducting a study at Spaulding Hospital Cambridge to determine if electrically-stimulated rowing can improve heart health more than arms only rowing or no exercise in individuals with a recent C5-T12 spinal cord injury.  Interested individuals who are between the ages of 20-40, have become spinal cord injured within the last 3-6 months, and have some arm strength should contact Glen Picard at gpicard@partners.org or 617-758-5500.

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Focus Group for Mothers with a Physical or Mobility Disability
October 24, 2013
, 5:00 PM – 7:00 PM
November 14, 2013, 5:00 PM – 7:00 PM
Boston, MA
The University of Massachusetts Medical School’s Center for Health Policy and Research is conducting a study of the health care experiences of mothers with physical or mobility disabilities before, during and after pregnancy.  Volunteers must have a physical or mobility disability, have given birth to a baby within the last seven years, live in the community in either Massachusetts or Rhode Island, speak English, and be betwen 21-50 years of age.  Participants will receive $50 at the end of the focus group.  If interested, please contact Lauren Smith at 1-508-856-8346 or lauren.smith@umassmed.edu. This research is funded by the National Institutes of Health.

Additional focus groups are being planned in locations in Massachusetts and Rhode Island.  Please contact Lauren even if you are not able to attend on October 24th or November 14th.

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What do need to know about living with a spinal cord injury?

MSKTC Fact Sheet Survey
The Model System Knowledge Translation Center (MSKTC) is conducting a brief survey asking consumers with SCI for suggested topics for future fact sheets.  The survey can be completed online at http://websurveyor2.airws.org/Community/se.ashx?s=251137452E498FF8.

Current MSKTC fact sheets include the following SCI topics:
Depression; Employment; Gait Training; Pain; Safe Transfer Technique; Skin Care & Pressure Sores;
and What the SCI Consumer Needs to Know about Wheelchairs. 

SCI fact sheets in development include: 
Aging; Bladder Care; Bone Health; Bowel Care; Driving and Auto Safety; Obesity and Nutrition; Physical Activity; Plregnancy, Labor, and Delivery; Sexual Function; and Respiratory Complications.  
Please let us know other topics that you would like to learn about.

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ABLE (Active Behaviors for Living Empowered) Program
The Miriam Hospital
ABLE is a research program for smokers with mobility impairments who use a cane, scooter, brace, walker, or wheelchair, etc.  Individuals do not have to want to quit smoking in order to participate.  Eligible participants will receive a state of the art health program mailed to their home, 8 weeks of free nicotine patches if medically eligible, and reimbursement for their time.  Interested individuals should call 401-793-8168 or 855-401-ABLE (2253), or email able@lifespan.org.

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Focus Group for Mothers with a Physical or Mobility Disability
July 24, 2013
The University of Massachusetts Medical School’s Center for Health Policy and Research is conducting a study of the health care experiences of mothers with physical or mobility disabilities before, during and after pregnancy.  Volunteers must have a physical or mobility disability, have given birth to a baby within the last seven years, live in the community in either Massachusetts or Rhode Island, speak English, and be betwen 21-50 years of age.  Participants will receive $50 at the end of the focus group.  If interested, please contact Lauren Smith by July 22, 2013 at 1-508-856-8346 or lauren.smith@umassmed.edu. This research is funded by the National Institutes of Health.

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Survey on Emergency Communications & People with Disabilities
The Wireless Rehabilitation Engineering Research Center has launched a new survey on emergency communications to help improve accessibility of emergency response. You will be asked to share some information about yourself, your experience and your preferences for communicating during emergencies. You can take the survey online, by phone or on paper by calling 1-404-367-1348.

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Participate: PAS Center Seeks Stories from Disaster Survivors
The NIDRR-funded Rehabilitation Research and Training Center on Personal Assistance Services (PAS) in the 21st Century seeks stories from individuals with disabilities who use PAS and have experienced emergencies or disasters. Participants must use one or more personal assistants (paid or volunteer) and have experienced a large scale emergency in the last 5 years such as, but not limited to, a storm, tornado, hurricane, earthquake, fire, flood, heat or cold wave, power outage, or chemical spill. Participants must be willing to share their stories on the Center’s website in the interest of helping others understand and learn from their emergency experience. To participate, complete the survey to share your story, and become eligible to win one of five $50 gift cards.

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Bone Loss and Respiratory Health in SCI
Investigators from VA Boston Healthcare System and the Spaulding Rehabilitation Hospital are conducting studies assessing factors that may be important in the overall health of people with spinal cord injury, particularly respiratory health and bone health.  We hope to assess how respiratory health and bone health change in association with aging and other factors.

The study visit consists of pulmonary function testing, a bone density scan, a blood draw, measurements of height and weight, and several questionnaires.  Testing takes approximately 3 hours and you will be provided with your clinical test results.  You will be compensated $100 for your time.  If you are interested in participating, are at least 22 years old, at least one year post-injury, and do not have other neurological disorders, please call Rachael at (857) 364-4896.  This research is funded by the VA Rehabilitation R&D and the National Institutes of Health.

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Health Information Needs of Caregivers
The Model Systems Knowledge Translation Center (MSKTC) is recruiting individuals over 18 who are the primary caregivers of someone who sustained a spinal cord injury. Participants will engage in a phone interview to better understand caregivers’ health information needs.  Participants will be compensated $20.  If you are interested, please call Deeza-Mae Smith at 202/403-5127 or email msktc@air.org for more information.

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Testing a New Knee Ankle Foot Orthosis Brace (KAFO)
Researchers at the Providence VA Medical Center and Yale University are looking for volunteers 18 and older to participate in a research study to test a new KAFO brace that is not yet commercially available.  This study requires at least 15 visits.  Study visits will be conducted at the Providence VA Medical Center (PVAMC).You will not be able to take the KAFO home with you.  Volunteers will be compensated for their participation.  Reimbursement for travel will also be provided.  For more information contact Susan Rizzo at (401) 273-7100 Ext. 6274.

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Wheeled Mobility Seating and Positioning
The University at Buffalo is conducting a study to improve the communication of new research findings in the area of wheeled mobility seating and positioning to potential information users. The study seeks people in the following roles:  manufacturers, suppliers, prescribers /therapists, nurses, researchers, and consumers.  Participants will be paid to complete three web-based survey questionnaires during 2012 and early 2013.  Each survey will take approximately 15 minutes to complete.  If you are interested in learning more about the study or would like to participate please send an email to Sue Arnold – sphhp-kt4tt@buffalo.edu

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Novel Imaging Technique to Evaluate Potential Nerve Fiber Regeneration
Researchers from the Departments of Radiology and Neurology at Yale University are recruiting patients (ages 18-60) who have a traumatic spinal cord injury between C6 and T12, ASIA A or B at greater than 3 months since acute injury without prior neurological injury.  Participants must NOT take a serotonin reuptake inhibitor (SSRI – Prozac, Paxil, Celexa, Lexapro, Zoloft, Cymbalta, Effexor) within two weeks of the imaging study, and be able to lie flat for approx. 30-45 minutes.

This IRB-approved clinical study uses a novel imaging technique to evaluate potential nerve fiber regeneration.  Initial screening visit includes routine lab work.  If eligible, a second visit will be scheduled for imaging studies.  All visits take place at the Yale University PET Research Center near Yale – New Haven Hospital.  You will be compensated $50 for an initial visit and if eligible, a second visit for imaging (up to $850). Reasonable transportation costs will be reimbursed with valid receipts.  If interested, please contact Brian Kelley at 203-785-5091 or brian.kelley@yale.edu.  This study is being conducted by the Center on Knowledge Translation for Technology Transfer at the University at Buffalo, and is sponsored by the National Institute on Disability and Rehabilitation Research (NIDRR) of the US Department of Education.

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Quadriplegic Participants Needed for Research Study
Patients who are quadriplegic from SCI, brainstem stroke, muscular dystrophy, or motor neuron disease such as amyotrophic lateral sclerosis (ALS) and have no or limited use of their hands are needed for an FDA regulated research study to evaluate a new technology which may allow and individual with quadriplegia to control a computer cursor by thought.  This study is invasive and requires surgery.  You must live within two hours of Boston, MA to participate.  The study requires a commitment of 13 months and is being conducted by Dr. Leigh Hochberg at Massachusetts General Hospital.  If you’d like to learn more about this study, please contact Dr. Leigh Hochberg at 617-726-4218.