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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. ​

Support Groups

Your not alone! Meet with others who've had your illness. Learn and share what works best.

Adaptive Sports

Sports should be a part of your life! Try all the adaptive events and see what your missing!

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.) We will feature a new disease or illness every other month. (So in July, we featured stroke studies. In September we’ll feature Parkinson’s, etc.) 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, but we will expand that by year end.

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. Rehabilitation Robotics, Cognitive Skills Training and Function

Estimated Completion Date: Jul 2020     Estimated Enrollment: 15 Participants
Contact: Susan E. Fasoli, ScD, OTR/L     (617) 643-4777     sfasoli@mghihp.edu
Contact: Catherine Adans-Dester, PT     (617) 952-6321     cadans-dester@partners.org

Description: This study evaluates the effects of robot-assisted therapy for adults more than 6 months after stroke on upper limb functioning. Half of the participants will receive robot-assisted therapy for the arm affected by stroke, and the other half will receive robot-assisted therapy plus training in how to use the weaker arm during everyday activities.

Cecropia Strong’s Advice: Sue Fasoli has the study on hold at this time, because of COVID-related delays. Check back in mid-October.

Stroke studies, 7/21, #1
Stroke

2. Wrist-worn Sensors for tele-rehabilitation of the Hemiparetic Upper Extremity

Estimated Completion Date: Aug 31, 2021  Estimated Enrollment: 60 Participants
Contact: Catherine Adans-Dester, PT     (617) 952-6321     cadans-dester@partners.org

Description: Stroke and other causes of central nervous system damage can result in debilitating loss of motor control that is often more pronounced in one limb than the other. Using or attempting to use the affected limb during activities of daily living, despite considerable difficulty, stimulates neuroplasticity and motor function recovery. The investigators are conducting a clinical study to test the efficacy of wrist-worn sensors that encourage affected limb use during activities of daily living.

Cecropia Strong’s Advice: 

 

3. Robotic Exosuit Augmented Locomotion (REAL)

Estimated Completion Date: Dec 2021    Estimated Enrollment: 30 Participants
Contact: Franchino Porciuncula, EdD, PT   (617) 495-4621   fporciuncula@seas.harvard.edu

Description: Previous studies of the exosuit technology have culminated in strong evidence for the gait-restorative effects of soft robotic exosuits for patients post-stroke by means of substitution for lost function. The present study builds on this work by suggesting that an exosuit’s immediate gait-restorative effects can be leveraged during high intensity gait training to produce long-lasting gait restoration. For this protocol, exosuits developed in collaboration with an industry partner, ReWalk™ Robotics will be used. The spectrum of behavioral and physiologic data that we will collect will enable us to understand more comprehensively the gait-restorative effects of REAL.

Cecropia Strong’s Advice: Franchino Porciuncula reported that the number to reach him at has changed, and the best number is (617) 500-3645. This study takes place in the lab (either Boston University or Spaulding Rehab Hospital). Participants will be randomly assigned to either a control group (without the REAL exosuit) or the experimental group (with the REAL). Both groups will receive physical therapy. Outside PT or OT on the lower limbs is not allowed during this study. They currently have 5/30 participants enrolled. The completion date will be extended to Summer 2022.

Stroke studies, 7/21, #3
Stroke studies, 7/21, #4

4. Outcome Measures Study on an Adult Myoelectric Elbow-Wrist-Hand OrthosiS

Estimated Completion Date: May 2023     Estimated Enrollment: 100 Participants
Contact: Sarah Chang, PhD     (425) 771-0797 ext 1007   schang@orthocareinnovations.com
Contact: Jon Naft, CPO    (440) 285-5785    jnaft@greop.com

Description: The objective of this study is to evaluate the therapeutic and functional gains of a myoelectric elbow-wrist-hand orthosis for adult individuals with upper limb impairments using repeated measures studies that combines both gross motion and quantitative function outcome measures. The primary outcomes of this study will collect data on the participants’ therapeutic and functional outcome measures when using the MyoPro over time in their home.

Cecropia Strong’s Advice: Sarah Chang said this study is run separately from the MyoPro orthotic usage. If someone wanted to join this study, they’d first need to contact Myomo (the vendor) and see if they’d qualify for MyoPro use. Once they’ve gotten the MyoPro, they can then join the study. Participants are strongly encouraged to get outside therapy during this time. They currently have 10/100 participants enrolled.

 

5.Do you have trouble opening one or both of your eyes?

Estimated Completion Date: Nov 21, 2021  Estimated Enrollment: 50 Participants
Contact: Kevin E. Houston, OD, FAAO    (617) 573-4177    kevin_houston@meei.harvard.edu
Contact: Sheryl Erwin     (617) 573-6533     sheryl_erwin@meei.harvard.edu

Description: We are studying two different non-surgical devices for people with ptosis (incomplete opening of the eyelid).  Both devices have been designed with the purpose of giving you a larger field of vision by opening your eyelid while still allowing you to blink.

Ptosis can affect a person’s ability to see because the eyelid stays partially or totally closed.  Surgery is the most common way to treat ptosis, however, surgery might over-correct the ptosis and might not allow a person to blink as much as normal which can cause additional vision problems.  In this study we will evaluate two non-surgical approaches to treating ptosis which may address these problems.

Cecropia Strong’s Advice: Sheryl Erwin reported that the study will go on after the estimated completion date. (That’s when they’ll receive additional funding.) They currently have 7/50 participants signed up.

Stroke studies, 7/21, #5
Stroke studies, 7/21, #6

6. Seeking Stroke Victims to Evaluate Brain Recovery after Chronic Stroke

Estimated Completion Date: Dec 2021      Estimated Enrollment:
Contact: Christian Pusatere  (781) 864-6360      cpusatere@mgh.harvard.edu

Description: The purpose of the study is to develop, test, adjust, and improve new magnetic resonance imaging (MRI) and/or magnetic resonance spectroscopic imaging techniques for detection of function using our magnetic resonance systems and an investigational device that may help rehabilitation from stroke. The investigational device, called Magnetic Resonance Compatible Hand-Induced Robotic Device (MR_CHIROD), resembles regular exercise hand grips, and you will use it like you would with other exercise hand grips. The testing and improvement of magnetic resonance techniques requires multiple MR images several times using different settings used to obtain the MR image. The images are then compared to determine which of the settings under test allows the best visualization of the desired aspect of the brain.

Cecropia Strong’s Advice: 

 

7. Have you experienced a Stroke? Do you want to help us advancing gait therapies?

Estimated Completion Date: Aug 14, 2022     Estimated Enrollment:
Contact: Catherine Adans-Dester, PT     (617) 952-6321     cadans-dester@partners.org

Description: The purpose of this study is to collect performance data on the ability of an investigational device to improve walking speed in people who suffered a stroke at least six (6) months in the past and who are limited in mobility outside the home. The investigational device includes a mobile device app and sensors that are attached to shoes. The device is designed to use audio cues to facilitate improvements in walking speed while listening to music.

Cecropia Strong’s Advice:

Stroke studies, 8/12, #7

Parkinson's Studies recruiting In the Boston Area

1. Bright Light Therapy for Non-motor Symptoms in Parkinson's Disease

Estimated Completion Date: Dec 2021     Estimated Enrollment: 65 Participants
Contact: Aleksandar Videnovic, MD, MSc     617-724-3837    avidenovic@partners.org

Description: Disruption of sleep and alertness is one of the most disabling non-motor symptoms of Parkinson’s disease (PD). Mechanisms leading to impaired sleep and alertness in PD are not well understood, and treatment options remain limited. The proposed research will examine markers of the circadian system, sleepiness and sleep quality in PD patients. Further, the project will examine effects of bright light exposure on circadin function, sleep and alertness in PD.

Cecropia Strong’s Advice:

Parkinson's Studies 9/10, #1
Parkinson's Studies 9/10, #2

2. EMG Modules as a Novel Biomarker of Basal Ganglia Plasticity in Parkinson's Disease

Estimated Completion Date: Aug 31, 2021  Estimated Enrollment: 60 Participants
Contact: Eric Fabara, MD   617-952-6388   efabara@partners.org
Contact: Catherine Adans-Dester, PT     (617) 952-6321     cadans-dester@partners.org

Description: Parkinson’s disease leads to severally impaired motor control. The purpose of this study is to better understand and analyze the characteristics of arm muscle activity while doing some reaching tasks and of leg muscles while walking. This will allow the investigators to improve understanding of the mechanisms underlying the motor impairments in Parkinson’s disease.

Cecropia Strong’s Advice: 

 

3. Parkinson's Disease: Enhancing Physical Therapy With Brain Stimulation for Treating Postural Instability

Estimated Completion Date: Jun 2022     Estimated Enrollment: 18 Participants
Contact: Felipe Fregni, MD PhD MPH    617-952-6156    ffregni@partners.org
Contact: Contact: Meghan Whalen, BS  617-952-6158    mwhalen7@partners.org

Description: This trial aims to understand the mechanism and to test whether transcranial direct current stimulation (tDCS) combined with transcranial ultrasound (TUS) (tDCS+TUS) combined with physical therapy (PT) will induce significant therapeutic effects in postural instability in Parkinson’s disease (PT) patients. The investigators designed a double-blinded, placebo controlled, randomized study to investigate the effects of 2 weeks of TDCS+TUS on postural instability in PD patients receiving PT.

Cecropia Strong’s Advice:

Parkinson's Studies 9/10, #3
Parkinson's Studies 9/10, #4

4. Study of Gastrointestinal Dysfunction and Enteric Neural Pathology in Patients With Parkinson's Disease

Estimated Completion Date: Dec 31, 2022  Estimated Enrollment: 20 Participants
Contact: Anita Chung, RN     617-724-4515   tearneylabtrials@partners.org
Contact: Anna Gao, RN    617-643-6092    tearneylabtrials@partners.org

Description: The goal of this research is to determine (1) the feasibility of tethered capsule OCT esophageal imaging in the Parkinson’s Disease population; (2) the morphologic changes in the enteric nervous system of the esophagus in patients with Parkinson’s disease.

Cecropia Strong’s Advice: 

 

5. Speech, Linguistic and Acoustic Markers in Parkinson's Disease (SLAM-PD)

Estimated Completion Date: Aug 2022     Estimated Enrollment: 150 Participants
Contact: Kara Smith, MD    508-856-2527    kara.smith@umassmemorial.org
Contact: Meaghan Demers-Peel, BS     774-445-6568
meaghan.demers-peel@umassmed.edu

Description: We aim to identify speech and language markers that provide information on cognitive function and predict cognitive decline in Parkinson’s disease. We will administer various speech tasks and cognitive assessments to participants with Parkinson’s disease and healthy controls. We will also explore the associations between genetic factors and speech and cognitive status in Parkinson’s disease.

Cecropia Strong’s Advice:

Parkinson's Studies 9/10, #5
Parkinson's Studies 9/10, #6

6. Highly Challenging Balance Program to Reduce Fall Rate in PD

Estimated Completion Date: Jul 2023  Estimated Enrollment: 162 Participants
Contact: David W Sparrow, DSc   (857) 364-6400 ext 46400   david.sparrow@va.gov

Description: This study will test the hypothesis that two highly challenging exercise programs, one based at the VA medical center and the other conducted remotely, will both significantly reduce overall fall rates in patients with Parkinson’s disease.

Cecropia Strong’s Advice: 

 

7. Walking and mHealth to Increase Participation in Parkinson Disease (WHIPPD)

Estimated Completion Date: May 2023     Estimated Enrollment: 148 Participants
Contact: Skylar Shumate   617-358-6157    whippd@bu.edu
Contact: Martha Hessler    314-286-1478   mjhessler@wustl.edu

Description: Identifying effective ways to improve function, slow decline and reduce disability is a high priority for people living with Parkinson disease and other chronic conditions. Regular participation in walking is essential to reduce disability and enhance participation in preferred life activities. However, people with chronic conditions are often sedentary, contributing to greater disability. The goal of this work is to determine the benefits of a walking, walking enhancing exercises and cognitive-behavioral strategies delivered using mobile health technology for people with Parkinson disease over a sustained period of time.

Cecropia Strong’s Advice:

Parkinson's Studies 9/10, #7
Parkinson's Studies 9/10, #8

8. An RCT of a Telemedicine Intervention for Hypokinetic Dysarthria in PD

Estimated Completion Date: Apr 2025  Estimated Enrollment: 104 Participants
Contact: David W Sparrow, DSc   (857) 364-6400 ext 46400   david.sparrow@va.gov

Description: Nearly 90% of people with Parkinson’s disease have speech and voice disorders that negatively impact their ability to communicate effectively in daily life. This study will test the hypothesis that a combined speech and exercise intervention will improve speech intelligibility in people with Parkinson’s disease and speech impairment. This approach would offer an affordable way to continue to both instruct and encourage training by Veterans virtually indefinitely through the remote access technology. These findings may help VA clinicians provide optimal care for the many Veterans with Parkinson’s disease and speech impairment.

Cecropia Strong’s Advice: