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It's not about me. it's now about we!

Surprisingly, 26% of the population have disabilities. You’ve got to make your needs known. State what’s not working properly (your left leg, your balance, your vision), and clearly ask for what help you require. You won’t get it right all the time, and neither will the folks helping you. But you’ll grow and bond in the process!

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Folks with Disabilities should Consider:

Studies

This is the single most critical area for rehabilitation. We'll list all the studies by disease, for a region. ​

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Adaptive Sports

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Studies Needing Participants

Cecropia Strong’s Advice: These listings are posted from ClinicalTrials.gov, and several other sites (that advertise work before it’s reached the Clinical Trials stage.) These postings are available at the host sites, but they usually require detailed reading to make sense of them. Furthermore, some are intended for patients in-hospital, under a doctor’s care, and aren’t appropriate for folks at home (we don’t include those.) Many studies offer a financial incentive, but the study’s contact can tell you if that’s the case. Data has been edited for brevity, but call or write to the contact if you’d like more detail. These postings are targeted for 50 miles around Boston.

From ClinicalTrials.Gov

In a clinical trial, participants receive specific interventions according to the research plan or protocol created by the investigators. These interventions may be medical products, such as drugs or devices; procedures; or changes to participants’ behavior, such as diet. Clinical trials may compare a new medical approach to a standard one that is already available, to a placebo that contains no active ingredients, or to no intervention. Some clinical trials compare interventions that are already available to each other. The investigators try to determine the safety and efficacy of the intervention by measuring certain outcomes in the participants. For example, investigators may give a drug or treatment to participants who have high blood pressure to see whether their blood pressure decreases.

Stroke Studies recruiting In the Boston Area

1. An Augmented Reality Based System for Neglect Detection, Assessment, and Rehabilitation

Estimated Completion Date: Sept 2024     Estimated Enrollment: 10 Participants
Contact: Sarah Ostadabbas, PhD     617-373-4992     ostadabbas@ece.neu.edu

Description: This study evaluates the effects of augmented reality for adults experiencing neglect post-stroke during activities of daily living. Participants will be wearing an EEG cap and Augmented Reality headset while working with a licensed occupational therapist for 1-hour sessions, for a total of 10 sessions. Sessions will be scheduled around an existing therapy schedule to cause the least amount of interference with planned clinical activities.

Cecropia Strong’s Advice:

Stroke study #1 4 2023
Stroke study #2 4 2023

2. Improving Visual Field Deficits with Noninvasive Brain Stimulation

Estimated Completion Date: Oct 2025  Estimated Enrollment: 92 Participants
Contact: Lorella Battelli, PhD     617-667-0326     lbattell@bidmc.harvard.edu

Description: This study evaluates the rehab protocol of using moving stimuli and noninvasive electrical brain stimulation for individuals with visual field deficits as a result of cortical brain lesions. There will be two groups: one receiving noninvasive stimulation with computer-based visual training and the other receiving noninvasive stimulation alone without any visual training. This study is limited to individuals after their first ischemic stroke.

Cecropia Strong’s Advice: As of 3/31/23, this clinical study is still recruiting at least 15 more participants.

3. Innovative Measures of Speech and Swallowing Dysfunction in Neurological Disorders (QUESST)

Estimated Completion Date: Dec 2025    Estimated Enrollment: 200 Participants
Contact: Hilda Gutierrez, MD   617-667-3086  hgutier1@bidmc.harvard.edu

Description: This study evaluates the use of two painless, noninvasive technologies in the assessment of muscle health in the face and tongues in healthy volunteers and patients with conditions affecting the nervous system. Speech and swallowing abnormalities are important symptoms associated with disorders of the central nervous system, motor neuron disease (such as amyotrophic lateral sclerosis), myasthenia gravis, and primary muscle conditions. In addition to characterizing the evolution in muscle architecture that could underlie associated orofacial weakness, identifying new ways to measure these abnormalities is critical to the development and testing of novel treatment approaches.

Cecropia Strong’s Advice: On 3/29/23, Dr. Gutierrez reported they are not actively recruiting participants at this moment.
Stroke
Stroke study #4 4 2023

4. Study Evaluating MyoRegulator Treatment in Post-Stroke Upper Limb Spasticity (RECOVER)

Estimated Completion Date: Oct 2023               Estimated Enrollment: 72 Participants
Contact: Andrea Christoforou, PT, PhD, MSc, NCS 617-952-6818 achristoforou@partners.org
Contact: Leon Moralex-Quezada, MD, PhD 617-952-6162 jmorales-quezada@partners.org

Description: Spasticity is a common finding in patients with stroke, arising in about 30% of stroke patients, and occurring usually within the first few days or weeks. It is a disorder of motor function that results from injury to the spinal cord or brain, and causes decreased motor performance as well as pain, discomfort and muscle weakness that greatly interferes with functional recovery. Spasticity can range from mild to severe and can cause striking impairments in functional movement. The main objectives of this study are to evaluate the performance and safety of the MyoRegulator® device in active- versus sham-treated patients after 5 consecutive days of treatment. The MyoRegulator® device uses multi-site direct current stimulation for the treatment of muscle spasticity.

Cecropia Strong’s Advice: Participants of this study must have had a stroke at least 6 months prior to the study and will forgo Botox injections, physical therapy, and occupational therapy for the upper extremity for the duration of the study.

5. Novel Wrist Sensory System to Promote Hemiparetic Arm Use In Home Daily Life of Chronic Stroke Survivors

Estimated Completion Date: June 30, 2025  Estimated Enrollment: 32 Participants Contact: Gloria Vergara Diaz   (617) 952-6320 gvergaradiaz@partners.org
Description: This study is trialing the effects of the StrokeWear system over a period of 6-months in chronic stroke survivors. Study participants may be asked to undergo a series of assessments to check for eligibility. If accepted into the study participants will be asked to wear a set of sensors on their wrist and hands for up to 7 days while going on their normal routine. After the 7 days participants will be asked to return equipment. Participants can still receive outside therapy while participating in this study.

Cecropia Strong’s Advice:

Stroke study #5 4 2023
Stroke studies, 7/21, #6

6. Optimizing Ankle-Foot Orthoses Prescription By the Use of an Exoskeleton Platform

Estimated Completion Date: Nov 2023      Estimated Enrollment: 21 Participants
Contact: Eric Fabara  617-952-6336     efabara@partners.org

Description: This study is looking to improve ankle-foot orthosis (AFO) prescription to help walking ability and balance for stroke survivors. Study participants will be asked to perform a series of tasks wearing participants usual AFO and in different stimulated conditions using the Dephy ExoBoot. Participants of this study must be between 18-80, have survived a stroke at least 3 months prior to participating in the study, are currently using an AFO, can walk unassisted (without a walker or assistance from another person), and has a shoe size compatible with the ExoBoot (US Men 7-12/ US Woman 8-13).

Cecropia Strong’s Advice: 

 

7. Gait Better

Estimated Completion Date: Aug 30, 2023     Estimated Enrollment: 35 Participants
Contact: Eric Fabara  617-952-6336     efabara@partners.org

Description: This study is looking for participants between the ages of 18 and 85 who have experienced a stroke and currently have gait impairments. Participants must be able to walk at least 50 feet with or without an assistive device. Participants will be involved in 2 evaluations and 15 gait training visits at the Motion Analysis Laboratory located at Spaulding Rehabilitation Charlestown. Each gait training session will be 60 minutes and include 45 minutes of walking on a treadmill.

Cecropia Strong’s Advice:

Stroke Study #7 4 2023