Health Interventions for Survivors and Primary Support Persons of Spinal Cord Injury

The purpose of this research study is to develop and evaluate new ways of assisting middle-aged and older persons living with the long-term effects of SCI/D.

This research study is supported by the National Institutes of Health and will be carried out in two locations: Miami , Florida and Pittsburgh , Pennsylvania . Approximately 250 persons with spinal cord injury, as well as those that provide SCI/D survivors with primary support, will be enrolled into the study. Those who agree to participate will be assigned to one of several intervention groups. The duration of intervention for all groups will be six months.

If you are interested in participating in this study, or would like more information, please contact Trinidad Arguelles or Khania Cavalcante, SCI/D Research Associate, at the University of Miami 's Center on Aging (305) 355-9200.

NSCIA Supports Free Public Access to NIH Research

The National Spinal Cord Injury Association (NSCIA) wholeheartedly supports enhanced public access to research information. Founded in 1948, the National Spinal Cord Injury Association is the nation's oldest and largest civilian organization dedicated to improving the quality of life for hundreds of thousands of Americans living with the results of spinal cord injury and disease (SCI/D) and their families. [full story]

Nobody Left Behind: Emergency Preparedness for Persons with Mobility Impairments

If you have a mobility limitation and have experienced any type of natural disaster - we want to hear from you!

Whether you have past recollections or current experiences, we would like you to complete a brief survey if you have a mobility limitation and have personal experience with any type of natural disaster such as tornadoes, flooding, hurricanes, earthquakes or man-made disaster.

This on-line survey is fully accessible and can be found at http://rtcil.org/survey.htm. It is easy and will take less than 10 minutes of your time and it will be important in shaping the future of emergency planning!

ClinicalTrials.gov - Information on Clinical Trials and Human Research Studies

Nationwide database of private and public clinical research - search results for "spinal cord injury" now.

Conference On Emergency Preparedness For People With Disabilities

This conference is the first to focus on disaster preparedness, response, and recovery specific to the unique emergency needs of people with disabilities.

Dates: Wednesday, September 22 to Friday, September 24, 2004

Location: Hyatt Regency Crystal City, Arlington, VA

Time: Two and a half day conference with workshops, networking opportunities, concurrent professional training sessions, and a vendor/exhibit hall

10 Worst States Survey

ADAPT will be ranking the 2004 "Ten Worst States" in providing home and community services and supports compared to nursing home and other institutional services. This ranking will be released in mid July, 2004. This assessment will combine information taken from statistical data released to the public on state spending in various categories as well as the views of advocates in the states who experience "the good, the bad and the ugly" of our states long term care system.

Please help by filling out ADAPT's 10 Worst States Survey.

Your support will assist us in accurately ranking your state. All individual responses will be confidential.

Translational Pain Research

The Department of Anesthesia at the Brigham and Women’s Hospital, located in Boston, Massachusetts is currently seeking adults 18 – 70 to participate in a 31-week research study to evaluate investigational drugs as a treatment for specific types of pain as a result of a Spinal Cord Injury (SCI). The study involves 5 or 6 hospital inpatient visits. Participants will receive up to $1600 upon completion of the study. Email: paintrials@partners.org

Are You Interested In Wheelchair Research?

The Human Engineering Research Laboratories is recruiting individuals interested in participating in research studies for the WHEELCHAIR USERS REGISTRY. If you would like to be notified of Wheelchair related Research Studies for which you may be eligible to participate, contact The Human Engineering Research Laboratories and join the Wheelchair Users Registry. This is an informational resource and notification of a study does not obligate you to participate. You do not need to be located in nor are you required to travel to Pittsburgh in order to participate in research studies. If you are at least 18 years of age, and use a wheelchair or scooter, please contact Ros, Annmarie, or Amy, for more information.

VA PGH Healthcare System 7180 Highland Drive Pittsburgh, PA 15206

412-365-485, email: boylesa@herlpitt.org, website: www.herlpitt.org

Acorda Therapeutics Reports Results of Fampridine-SR Clinical Trials

Hawthorne, NY, April 14, 2004 - Acorda Therapeutics announced today initial results of both a Phase 2 clinical trial of its lead product candidate, Fampridine-SR, in people with multiple sclerosis (MS), and two Phase 3 trials in people with chronic spinal cord injury (SCI). Data from the MS trial showed a strong positive trend in improvement of walking speed and a significant improvement in leg muscle strength, the trial’s primary and secondary endpoints. Data from one of the two SCI trials showed a strong positive trend in a primary endpoint of reducing muscle spasticity, but neither SCI trial achieved statistical significance in its primary endpoints. Acorda plans to meet with the U.S. Food and Drug Administration (FDA) to discuss a potential Phase 3 trial of Fampridine-SR in MS and further development for SCI. [ full story ]

Rehabilitation after Spinal Cord Injury:
Which Method is Better for Improving Walking and Balance?

We are looking for subjects to participate in an NIH-funded study that explores this question in relation to persons with incomplete spinal cord injury. The project tests methods that may improve walking in people with such injuries. It includes track and treadmill based training, as well as comprehensive physical therapy. Participation is open to men and women ages 16-70 with a spinal cord injury at the T10 level or above, and whose injury is of at least one year's duration.

The study takes place in Syracuse, NY at Upstate Medical University, part of the State University of New York (SUNY) system. Your participation will last for about 14 weeks, and wheelchair accessible housing may be available for a minimal cost.

For more information please call Todd Charland at (315) 464-9943 or send an e-mail to charlant@upstate.edu.

Spinal Cord Injury and Exercise Capacity (Washington, DC area)

The National Rehabilitation Hospital in Washington, DC needs persons with spinal cord injuries to participate in a cardiovascular disease risk screening and exercise testing study.

In order to participate:

• Your spinal cord injury must have occurred at least 1 year ago
• Your spinal cord injury must be motor complete (no movement below the level of injury)
• You have no documented history of cardiovascular disease
• Be willing to have blood drawn from a vein in the arm
• Perform arm bike (arm crank) exercise test
• Maintain a 4-day dietary record

Persons who qualify will participate in 2 visits to National Rehabilitation Hospital in Washington, DC on 2 different days

All medical testing will be provided for you at no cost. Upon completion of this study, monetary compensation will be provided.

If you or someone you know is interested in participating, please contact Alison at 202-877-1358 or e-mail alison.m.lichy@medstar.net for enrollment or to get further information.

This study is conducted by the National Rehabilitation Hospital Rehabilitation Research and Training Center: Secondary Conditions in the Rehabilitation of Individuals with Spinal Cord Injuries.

Spinal Cord Injury and Robotic Assisted Walking (Washington, DC area)

The National Rehabilitation Hospital in Washington, DC is looking for participants with spinal cord injuries to take part in a robotic assisted walking study.

To qualify:

• You must be able to stand supported 20 minutes or longer
• It must be 2-4 months since your spinal cord injury
• Your spinal cord injury must be motor incomplete (you have movement below your level of injury)

All participants will receive free research-related medical assessments including blood analysis, questionnaires, exercise testing, and bone mineral density testing in Washington, DC.

Persons who qualify will be randomly assigned to either:

1. Exercise training group: will receive all medical assessments and participate in 72 robotic gait-training sessions.

OR

2. Usual care group: will receive all medical assessments, but no robotic gait training sessions.

Monetary compensation will be provided to all participants.

If you or someone you know is interested in participating, please contact Alison at 202-877-1358 or e-mail alison.m.lichy@medstar.net to enroll or to get further information.

This study is conducted by the National Rehabilitation Hospital Rehabilitation Research and Training Center: Secondary Conditions in the Rehabilitation of Individuals with Spinal Cord Injuries.

Recreational Activities Survey

I've been C5 quad since '86 and I'm currently working toward a PhD in Disabilities Studies. I am enlisting the help of fellow persons with disabilities to participate in a national study concerning the participation and interest of persons with disabilities in recreational activities. I intend to use a portion of the data collected for my dissertation research. The aim of this study is to increase awareness and participation opportunities for people with disabilities in recreation activities. I would appreciate it if you would complete our online survey (takes about 10 minutes). To take the survey, please go to this link: www.rercrectech.org/surveys/default.htm

Questions? Call Amy Rauworth, Project Coordinator at (312) 355-1584, University of Illinois at Chicago.

Mechanical Engineering Design Survey

A group of mechanical engineering graduate students from Stanford University ( Palo Alto , CA ) and Luleå University of Technology ( Luleå , Sweden ) are involved in a year-long project entitled Design for Wellbeing that has challenged them to improve people's day-to-day wellbeing through mechanical engineering. They are aiming to improve the lifestyle of individuals with some sort of physical, sensory, or cognitive disability through the creation of a new and innovative assistive device.

In order to take the survey put 8587 in the 'take a survey' box.

Invitation to People with Disabilities to Participate in a Survey on Use of Medical Equipment

RERC on Accessible Medical Instrumentation is asking people to fill out a survey to learn more about the types of medical equipment that people with disabilities have found hard to use. The survey focuses on diagnostic equipment, procedural equipment, therapeutic equipment, and assistive technologies. If you have a disability and have experience as a patient with any of these types of medical equipment, please volunteer to fill out their survey.

Online on the Internet - go to: http://www.rerc-ami.org/personal/starter.htm

or contact staff by email at info@rerc-ami.org or by phone/TTY at (800) 832-0524 or by mail at RERC-AMI c/o CDIHP Western University of Health Sciences, 309 E. 2nd Street , Pomona , CA 91766-1854

Proneuron Actively Enrolling Patients for Study

Proneuron is currently enrolling patients in an experimental study of ProCord for the treatment of acute spinal cord injury. This FDA Phase II IND study is a randomized, controlled clinical trial in which there will be a 2 of 3 chance at assignment to the treatment group and a 1 of 3 chance at assignment to the control group. It is essential that study investigators are notified of a patient within a few days of the injury, as ProCord must be administered within 14 days of injury to meet study criteria.  The study is available to eligible patients worldwide, and is currently enrolling patients at Sheba Medical Center in Israel and in the U.S. at Craig Hospital in Denver, Colorado beginning in early December.  In 2004, the Mount Sinai Medical Center in NYC, Kessler Institute for Rehabilitation in West Orange, NJ. and Shepherd Center in Atlanta will also begin enrolling patients.

Interested patients, immediate family members of patients and/or physicians inquiries are requested to contact the Company¹s 24/7 patient recruitment center.

Email;
Telephone: (866) 539 0767 (U.S. toll free) or (506) 652 3486;
Fax: (866) 214-7078

Participants needed for research study

Wayne State University (WSU) looking for individuals with a spinal cord injury to participate in a research study. The study is funded by the National Institute on Disability and Rehabilitation Research (NIDRR), and headed by Cathy Lysack, Ph.D. at Wayne State University. The purpose of the study is to learn how adults with a spinal cord injury reconnect to meaningful activities in the community, and how social and environmental barriers sometimes make community participation difficult.

Dr Lysack is looking for individuals in the southeastern Michigan area to participate in the study. Participants will be paid $30 for one interview lasting about 2 ? hours. You must have a traumatic spinal cord injury and be between the ages of 18 and 65 years, to be eligible to participate in this study.

"If you would like to sign up or learn more about this study, please call me at Wayne State University, 313-577-2297, or e-mail. We look forward to hearing from you!"