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Research about SCI/D

Spinal cord injury and disease research information

1. Studies Currently Recruiting People with SCI/D

1.1. United Spinal Disclaimer

United Spinal Association provides information on spinal cord injury/disorders research as a service to its members.  United Spinal Association does not specifically endorse any research study and this information is provided for your convenience only. 

1.2. Study: Perceptions of Women with Disabilities and Childbirth Educators about the Educational Needs of Women with Disabilities related to Pregnancy, Labor and Delivery

Study:  Perceptions of Women with Disabilities and Childbirth Educators about the Educational Needs of Women with Disabilities related to Pregnancy, Labor and Delivery

Researchers at Villanova University are interested in learning about the educational needs of women with physical disabilities, including spinal cord injury and other spinal disorders, related to pregnancy, labor and delivery. We are specifically interested in learning about women's experiences with childbirth education classes (attendance vs. non-attendance, what information women wanted and received or not received from the classes, and women's unanswered questions about pregnancy, labor and delivery). A phone interview will be conducted with women who are interested and a gift card will be provided to women who participate in the interview.  To be eligible, women must:

- Be at least 18 years of age

- Have SCI or other spinal disorder with some mobility limitation

- Be English speaking

- Have delivered a baby since SCI or since diagnosed with spinal disorder and within the last 10 years

If you are interested in participating, please contact Suzanne Smeltzer at 610-519-6828 or Suzanne.smeltzer@villanova.edu  

1.3. The Future of Mobility Related Technology

Are you 18 years of age or older and use one or more assistive devices for mobility, such as a cane, walker, manual wheelchair, power wheelchair, scooter, or lower extremity prosthesis?

Rory Cooper, PhD of the Human Engineering Research Laboratories and the University of Pittsburgh would like to know about the assistive devices you use and your opinion about devices that may be available in the future. Your feedback is important to help guide future research and development. If you would like to participate in this research study you can go to http://tiny.cc/mobilitytech to complete the questionnaire. The questionnaire will take 15 minutes or less to complete and, if you choose, you can enter your name into a drawing to win $100 upon completion.

If you are unable to access the internet or have questions about the research study please contact one of their Clinical Coordinators at 412-822-3700.

1.4. Fatigue and SCI Survey

Fatigue Survey

Fatigue in SCI wheelchair users is a problem. A survey by UCLA seeks your opinion. The survey is easy to complete online. Your input is vital and your anonymity is assured.

Please visit the link and complete the survey.

www.SCIfatigue.com

To be eligible, respondents must be 18+, have a diagnosis of SCI/D, be a full-time wheelchair user, and speak English.

This study was approved by the UCLA Internal Review Board.

For further information please contact Alina Palimaru, at alinapalimaru@ucla.edu

1.5. Exercise Experiences and Barriers Among Individuals with Spinal Cord Injury - University of Texas Rio Grande Valley

Dear Community Members,

Two doctoral students, Chia Vang and Sergio Cuevas, and Dr. Noreen Graf, faculty advisor and Dr. Irmo Marini, professor, at The University of Texas Rio Grande Valley are interested in obtaining your perspective about exercise experiences and barriers among individuals with spinal cord injury.

We would appreciate if you fill out the following survey. The estimated time to complete the survey is 20-30 minutes.

The survey has been set up so that it is anonymous and the survey software will not collect IP addresses. This study has received IRB approval. A copy of the consent form will be provided prior to beginning the survey.

To access the survey please click on the link below:

 Anonymous Survey Link

https://utrgv.co1.qualtrics.com/SE/?SID=SV_2rged9gIAvJM2kB

1.6. Study to Prevent Urinary Symptoms in People with SCI/D-MedStar National Rehabilitation Hospital

Participate in Study to Prevent Urinary Symptoms in People with SCI/D

Are you an individual with spinal cord injury or spina bifida who struggles with urinary symptoms and uses intermittent catheterization for bladder management? If so, the SCI research team at MedStar National Rehabilitation Hospital––a partner of United Spinal Association–– would love to talk to you about participation in a study focusing on the prevention of urinary symptoms. The research team, located in Washington, DC, noticed during a past study that people with bladder dysfunction due to spinal cord injury or disease had much less urine Lactobacillus, which is considered a "healthy" bacteria, compared with those who didn't have SCI.

In response to this finding, we have decided to investigate whether Lactobacillus, when put back into the urine, might have a role in limiting symptoms and possibly reducing the need for antibiotics. Lactobacillus is a probiotic which has traditionally been used to aid with digestion and is naturally found in your body. In our study, the benefits provided by Lactobacillus will be targeted at bladder health rather than digestive health.

If you decide to participate in the study, we will need your assistance over a period of 18 months. While this seems to be a lengthy time frame, the study is broken down into three phases, each lasting 6 months, which require different levels of participation.

Phase 1: Completion of weekly survey
Phase 2: Completion of weekly survey and Lactobacillus instillation into the bladder when symptoms occur
Phase 3: Completion of weekly survey

If you are interested in participating or would like more information regarding the study, we can be reached through email at inger.h.ljungberg@medstar.net or by phone at (202) 877-1694. We can't wait to hear from you!

MedStar Health Research Institute provides scientific, administrative and regulatory support for research programs throughout MedStar Health. MedStar Health is a not-for-profit, regional healthcare system with nine hospitals and more than 20 other health-related services in the Maryland and Washington, D.C., region. More than a half-million patients trust their care to MedStar Health each year.

 

1.7. Employment Study: The Rehabilitation and Research Training Center (RRTC) at Virginia Commonwealth University (VCU). Posted 3/19/16

Invitation to Participate in an Employment Study

The Rehabilitation Research and Training Center (RRTC) at Virginia Commonwealth University (VCU) is conducting a study of adults with physical disabilities.  We want to know about your barriers to employment as well as resources that you need to support your work / career goals.  In addition, we are interested in knowing how you find information on employment services and supports. The target groups for the study are:

  • Adults with cerebral palsy, spinal cord injury, multiple sclerosis, or other physical disabilities

To be eligible to participate, you must be between the ages of 18 and 65, a U.S. citizen, be able to provide legal consent, and be a member of one of the targeted groups above. 

Participants will complete an online survey requiring approximately 20 minutes. One hundred participants will be randomly selected to receive a $25 gift card.  However, there is no guarantee that everyone who completes the survey will be selected to receive the gift card.

If you are interested in participating, the VCU-RRTC needs your consent.  You may do this by following the link below to read more about the study, review the survey questions, and give your consent.

http://vcurrtc.org/surveys/employment_w_pd/

 If you have questions or need special accommodations to participate in the study, please contact:

Dr. Katherine Inge
VCU-RRTC
P.O. Box 842011
Richmond, Virginia 23284-011
kinge@vcu.edu
804-828-5956
TTY: (804) 828-2494 

This research is sponsored by the National Institute on Disability, Independent Living, and Rehabilitation Research (#H133B130011) and has been approved by VCU's Institutional Review Board.

2. Latest News!!

2.1. FES Promotes Recovery in Chronic SCI

FES article in Science Daily

4 March 2013

Functional Electrical Stimulation Cycling Promotes Recovery in Chronic Spinal Cord Injury

A new study by Kennedy Krieger Institute's International Center for Spinal Cord Injury (Epub ahead of print) finds that long-term lower extremity functional electrical stimulation (FES) cycling, as part of a rehabilitation regimen, is associated with substantial improvements in individuals with chronic spinal cord injury (SCI). Improvements include neurological and functional gains, as well as enhanced physical health demonstrated by decreased fat, increased muscle mass and improved lipid profile.

2.2. Institute for Functional Restoration

The Institute for Functional Restoration or IFR, was created at Case Western Reserve University (CWRU) to make available interventions developed on campus that address the functions lost due to spinal cord injury or other paralytic conditions.  Much different than a research organization, the IFR chooses programs that have been shown to be viable solutions for patients and then navigates them through the pathway to availability outside of a research trial.  The Institute is funded by a combination of grants, philanthrophy and reimbursement.

2.3. Transcutaneous Stimulation

NeuroRecoveryTechnologies group reports success in returning voluntary motor function in five men living with chronic, complete SCI through non-invasive transcutaneous stimulation.

The company is focused on the development of two unique spinal cord neuromodulator systems (electric stimulation devices) sharing platform technology to address a significant unmet clinical need. The first is a non-invasive external system, classified by the FDA as a Class II De Novo 510k, for those patients with partial to complete paralysis. The second system is implantable, a PMA Class III device, used to optimally treat individuals with severe incomplete & complete paralysis. Each system is composed of complementary electrodes plus a wireless pulse generator containing proprietary circuitry and algorithms with our discovered formula for reactivating neural circuits. The systems facilitate customized programming and independent control of multiple stimulation sites.

3. Understanding SCI research

3.1. Understanding Research: Those Scary Statistics

Understanding Research:  Those Scary Statistics is an educational brochure developed by Craig Hospital for people with spinal cord injury. Revised 2015.

3.2. Understanding Research: Medical & Research Articles

Ever have trouble making sense out of articles in medical, scientific, and research magazines? This brochure from Craig Hospital will give you some pointers as you try to wade through all the techno-jargon you find. Revised 2015.

3.3. The Controversy Over Walking & Research

SCI Forum presentation "To Walk or Roll: The Controversy over Walking and Research". Presented on May 17, 2012 at the University of Washington Medical Center by the Northwest Regional SCI System, Department of Rehabilitation Medicine, University of Washington.

Will I ever walk again?" This is frequently the first question a patient with a new spinal cord injury asks. A focus on walking is normal after what can be a devastating injury. However, over time the focus on walking often fades and other issues that impact daily living move to the top of the wish list. Is there peril if individuals with SCI and researchers focus on walking too much? Where should we be putting our scant SCI research dollars? Our guest speaker, Michael Boninger, MD, examines this complex issue from the standpoint of both a dedicated physiatrist who has worked with SCI patients for over 20 years and a prominent researcher seeking solutions to the many problems caused by these injuries. Dr. Boninger is professor and chair of the Physical Medicine and Rehabilitation Department at the University of Pittsburgh, where he also serves as the medical director of the Human Engineering Research Laboratory and director of the University of Pittsburgh Model Center on Spinal Cord Injury.

 

4. United Spinal Association Research Related Webinars

4.1. All You Need to Know About Direct Nerve Stimulation 7/20/16

All You Need to Know About Direct Nerve Stimulation 7/20/16
This webinar introduces the latest technology applications for direct nerve stimulation for both the peripheral and central nervous systems and the published research supporting or negating them. Take away what you need to know to make an informed decision.
View Webinar Video | View Webinar PDF | Webinar Transcript

 

4.2. "Becoming a Lab Rat" – Lessons learned from participating in a Clinical Trial- 09/25/13

"Becoming a Lab Rat" – Lessons learned from participating in a Clinical Trial 09/25/13
This webinar provides resources to learn about available clinical trials, how to know if it is a valid trial, and what to expect by being a clinical trial participant. Presented by:

Kim Anderson-Erisman, PhD, Director of Education, Miami Project to Cure Paralysis

Jennifer French, MBA, Executive Director, Neurotech NetworkUSAWebinar_ClinicalTrial_Sept2013Final2.ppt

View Webinar PDF

Webinar Transcript PDF

4.3. Breakthroughs in Stem Cell Therapies 10/23/14

Breakthroughs in Stem Cell Therapies: 10/23/14
This United Spinal Association webinar discusses the differences in stem cells, the status of research and what you need to know before considering treatment.

Presented by: Jennifer French, Executive Director; Neurotech Network and Kim Anderson-Erisman, Ph.D.; Research Associate Professor, Department of Neurological Surgery-Director of Education, The Miami Project to Cure Paralysis; University of Miami Miller School of Medicine.

View Webinar Video

View Webinar PDF

Webinar Transcript PDF

5. General research information

5.1. Model Systems Knowledge Translation Center

The Model Systems Knowledge Translation Center (MSKTC) summarizes research, identifies health information needs and develops systems for sharing information for the National Institute on Disability, Independent Living, & Rehabilitation Research (NIDILRR) model systems programs in traumatic brain injury, spinal cord injury and burn injury.

5.2. National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR)

National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR)

 

NIDILRR is a federal government grants-making agency that sponsors grantees to generate new disability and rehabilitation knowledge and promote its use and adoption. 

 

5.3. NIH Clinical Research Trials and You

NIH has created a new website, NIH Clinical Research Trials and You (clinicalresearchtrials.nih.gov) to help people learn more about clinical trials, why they matter and how to participate.

Research has shown that some of the greatest challenges to recruitment of volunteers are the lack of general knowledge about what trials involve, where they are carried out, and who may participate. The new, centralized resource will make it easier for the public and health professionals to learn about clinical trials and how people can participate.

Visitors to the site will find information about:
. the basics of clinical trial participation
. experiences from clinical trial volunteers and explanations from researchers
. links on how to search for a trial or enroll in a research matching program

In addition, health care professionals can read about evidence-based strategies for talking with patients about trials, and find audience-tested posters to help promote trials in clinics and offices

6. Specific research information

6.1. BrainGate Neural Interface System

BrainGate is a brain implant system developed by the bio-tech company Cyberkinetics in 2003 in conjunction with the Department of Neuroscience at Brown University. A computer chip, which is implanted into the brain, monitors brain activity in the patient and converts the intention of the user into computer commands.
This brief newsclip shows the brain computer interface with implanted electrodes and a trial of its use with a quadriplegic man.

6.2. Lower Extremity Functional Electrical Stimulation Cycling study

A study published in the Journal of Spinal Cord Medicine by John W. McDonald, M.D., Ph.D., the neurologist who treated the late Christopher Reeve, finds that long-term lower extremity functional electrical stimulation (FES) cycling is associated with substantial improvements in individuals with chronic spinal cord injury. Prior to this study from Kennedy Krieger Institute's International Center for Spinal Cord Injury, the benefits of activity-based restorative therapy (ABRT) programs, such as FES cycling, were largely anecdotal despite being highly publicized in conjunction with the late-onset recovery demonstrated by actor and activist Christopher Reeve.

 

Some highlights of the study's findings include:

  • · Improved motor function was observed in 80 percent of the FES group, compared to only 45 percent of control subjects.
  • · Response in pinprick sensation was observed in 56 percent of the FES group compared with 25 percent of the control group.
  • · 14 of the 25 FES subjects showed response in light touch scores compared to six of the 20 controls.

 

What is FES Cycling?

In FES cycling, small electrical pulses are applied to the paralyzed muscles of an individual, stimulating the muscles to cycle on a stationary recumbent bicycle. The repetitive activity simulates movement and offers cardiovascular exercise similar to that which an able-bodied individual achieves through walking, but this new research shows that the results go far beyond basic health benefits.

6.3. Regeneration & Repairing Adult Stem Cells

Stem Cells and Regeneration of the Spinal Cord: Practical Barriers and New Cell Technologies is an SCI Forum presentation of the Northwest Regional SCI System, Department of Rehabilitation Medicine, University of Washington.  The forum was presented by:  

Philip J. Horner, PhD 

Associate Professor, Department of Neurological Surgery and Institute for Stem Cell and Regenerative Medicine, University of Washington.

 

6.4. Review of SCI Human Trials

This SCI Forum was presented on March 13, 2007, by the Northwest Regional SCI System, Department of Rehabilitation Medicine, University of Washington.

6.5. Saving Cord Blood

This information is provided by The Miami Project to Cure Paralysis, Education Department.

At this time, it is premature to make recommendations concerning the banking of cord blood for later use in nervous system disease or trauma. In some instances of genetic disease and cancer, treatment with non-autologous cord stem cells has been beneficial. There may be a more defined benefit as research in this area continues or other cell sources may prove equally useful.     

March 2012

6.6. UNC - Spinal Motor Neurons

A Summary of Research in the Laboratory of David L. McIlwain, University of North Carolina School of Medicine

6.7. Women with disabilities

The mission of the Center for Research on Women with Disabilities is to promote, develop, and disseminate information to improve the health and expand the life choices of women with disabilities.

7. Learn about Participation in SCI Research

7.1. Experimental Treatments for Spinal Cord Injuries: What you should know if you are considering participation in a clinical trial.

Click here to download the easy-to-read, version 2 of the booklet, available through ICORD (International Collaboration on Repair Discoveries), for people with spinal cord injury, their families, friends and caregivers. Also available in Spanish, German, Chinese, and Japanese.

7.2. Stem Cell Treatments: What to Ask

The International Society of Stem Cell Research provides information for people considering stem cell treatment at the website, "A closer look at stem cell treatments" including, Stem Cell Treatments: What to Ask. There is certain information you should look into if you are considering a stem cell treatment, including a detailed description of the treatment and the science that supports it, the expected outcome and the risks.

7.3. 60 Minutes expose on stem cell program fraud

This a cautionary tale of a fraudlent stem cell program featured on CBS-60 Minutes where unrealistic improvements are promised and large sums required for un-proven stem cell treatments (aired 2/27/11).

7.4. Video: Geron Stem Cell Clinical Trial Participant Shares Her Experience

Katie Sharify is one of five people with spinal cord injuries to participate in the world's first clinical trial testing human embryonic stem cells. On November 14th, she spoke about her clinical trial experience with a group of scientists who were meeting to discuss the best ways of advancing stem cell clinical trials. CIRM communications manager Amy Adams interviewed Sharify and her doctor, Stephen McKenna.

8. Where do I find ongoing research studies?

8.1. ClinicalTrials.gov

ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals.

8.2. California Institute for Regenerative Medicine

California Institute for Regenerative Medicine (CIRM)


CIRM, California's Stem Cell Agency, was created by the voters of California in 2004 when they passed Proposition 71, which authorized $3 billion in funding for stem cell research in California. The agency funds stem cell research at institutions and companies throughout California with the goal of developing new therapies for deadly diseases and disorders. 

8.3. Center Watch-Clinical Trial Search and Notification Service

The mission of Center Watch is to be the leading source of clinical trials information for both clinical research professionals and patients. To support our mission, we offer several professional, educational and informative services and resources from news and analysis on the industry to trial listings seeking study volunteers. For more information, click on the links below under the appropriate category.

CenterWatch offers several services and resources specifically to patients. With our Clinical Trial Listing Service we are able to provide patients unbiased information on clinical trials, with a clinical trial database that contains thousands of currently enrolling trials. Information on drugs and new medical therapies are available to review. CenterWatch also provides patients with health and educational resources about clinical trials and other health information.

Browse current Spinal Cord Injury trials listed by state/country (No log in of fee associated)

Patient notification Service (No fee associated)

 

 

8.4. SCIRE SCI research project

SCIRE- The products of SCIRE result from the combined efforts of expert scientists, clinicians, consumers and stakeholders to increase the accessibility of quality information in SCI rehabilitation. Recommended by a Craig Hospital advice line nurse as this Canadian-based research project reviews subjects bi-annually.

8.5. UAB Spinal Cord Injury Model System Information Network

The University of Alabama at Birmingham Spinal Cord Injury Model System Center (UAB-SCIMS) provides links to research information as a community service to researchers and individuals with SCI. The UAB-SCIMS does not necessarily endorse or support any of the projects that are listed.

 

8.6. Miami Project to Cure Paralysis

Check out the Miami Project to Cure Paralysis 

What Are Clinical Trials?

Clinical research is designed to answer specific questions about dysfunction and its treatment in humans. These questions may concern the cause of a medical or psychological condition or study the effectiveness and safety of a novel treatment or device.

Clinical research involves people who voluntarily give informed consent to serve as research participants without whom the research simply could not be done. Though volunteering for research does not guarantee a benefit, people who take part in clinical trials and studies make important contributions to the knowledge of, and progress toward, new treatments for Spinal Cord Injury (SCI) and its related problems.

A clinical trial is a carefully organized and controlled research study designed to test the safety and effectiveness of a novel treatment or device used for the first time for a particular medical or psychological condition.

The Miami Project conducts basic science research (laboratory setting) with the goal of making new discoveries and then translating them into successful clinical treatments for SCI through their Clinical Trials Initiative.

The Miami Project also carries out many clinical studies that address various problems associated with SCI, such as pain, spasticity, fatigue, fertility, fitness, rehabilitation, and other areas of concern for people with SCI. For more information, see "Current Studies". Through this research, scientists strive to discover valuable information about SCI that helps in development of new treatments.

How are Clinical Trials Introduced?

Scientists may invest years in basic science research, first in discovery and design of a new treatment and then in testing through experiments that model human disease. Once investigators complete "proof of concept" experiments, which establish a scientifically sound understanding of how a treatment works and potential benefit, the preclinical phase of research can begin.

The preclinical phase involves further research into the treatment's benefit through experimental models but also evaluates whether the treatment has the potential to cause harm. Investigators explore questions about possible damaging effects, such as the formation of tumors or toxicity from higher doses of a drug. These safety studies are very important to achieve approval to begin testing a new treatment in a human clinical trial.

Approval to perform human research at a given institution is received from an Institutional Review Board (IRB). An IRB is comprised of faculty, staff, and community members who are charged with ensuring the design of the clinical research is ethical and that the rights of study participants are protected throughout the study. Some clinical research also requires the approval of a governmental regulatory agency, such as the Food and Drug Administration (FDA) in the United States. Before a new treatment can be marketed as a treatment for a particular condition in the United States, it must be proven safe and effective. The FDA is responsible for ensuring the safety and effectiveness of all drugs, biologics, vaccines, and medical devices.

Clinical Trial Phases

Once a new treatment is approved for first time use in a clinical trial, the treatment will undergo evaluation in a series of clinical trial phases.

A Phase 1 trial is the first step and is designed primarily to evaluate the safety of a drug or treatment in humans. Safe dosage range and side effects are identified. Usually, a Phase 1 trial involves a few healthy volunteers and takes place at only one or two locations, but can include those with the target condition. Investigators use the study results to decide on the best dose and refine procedures for use in further testing.

After completing a Phase 1 trial, investigators will decide whether to seek approval to continue with a Phase 2 trial. A Phase 2 trial will expand the study to a larger group of people with the target condition and compare the results to those of a control group. Those in the control group will receive either the standard treatment or a placebo treatment – an inactive substance. The major goal of Phase 2 is to decide if the treatment is effective and to evaluate further its safety. A few hundred people may participate.

If the results of Phase 1 and 2 are promising, a Phase 3 trial may be sought with an even larger and more diverse group of people with the target condition. The goal of this phase is to confirm effectiveness, monitor side effects, and collect information that will allow safe use of the drug or treatment. Investigators compare the results of the new treatment to that of a standard or placebo treatment. Typically, they will perform a randomized controlled trial in which research volunteers are assigned randomly to either a group that receives the new treatment or a control group that receives the standard or placebo treatment. Several hundred to thousands of people may take part.

The final clinical trial phase is a Phase 4 trial. A Phase 4 trial is conducted to evaluate the ongoing long-term safety and effectiveness of a treatment in large and varied populations and to study additional uses of the drug or treatment. This phase usually takes place after the treatment has been made available to doctors and been approved for standard use in treating at least one condition. Hundreds to thousands of people may take part.

Clinical Research Protocols

All clinical trials and studies have a protocol – a careful set of rules that set forth how the clinical experiment is to be conducted. The protocol specifies the treatment procedures and doses, the route of administration, the number of participants, the specific inclusion and exclusion criteria that define who may enroll in the study, the duration of the study, and the schedule of the tests or interventions that will measure the results. In trials and studies for SCI, examples of inclusion criteria might be the volunteer's level and type of injury, the time since injury, age, and gender.

An important part of the clinical protocol is the informed consent, which is an ongoingprocess that gives people ample opportunity to learn the important facts about a clinical trial so they can decide whether to begin or continue participation. During this process, an investigator explains what will happen to the research volunteer. Depending on the treatment under investigation, research volunteers may or may not experience a direct benefit because of their participation.

- See more at: http://www.themiamiproject.org/research/what-are-clinical-trials/#sthash.JiQBvKiR.dpuf 

8.7. Unite 2 Fight Paralysis

Information on clinical trials from around the world was compiled by a dedicated group of volunteers for the benefit of the spinal cord injury community, and is updated regularly.  Unite 2 Fight Paralysis does not imply or infer an endorsement or recommendation of any of the research listed.

Clinical Trials Chart Acronym Page

List of Ongoing Clinical Trials

List of Completed Clinical Trials

For information on additional clinical trials, please visit the clinicaltrials.gov website. There is also a search feature that allows you to search for clinical trials by location.

Questions and comments are welcome and should be directed to: trials@unite2fightparalysis.org

(Feb 2016)

8.8. Rehabilitation Institute of Chicago

List of active and recruiting research studies at RIC

9. Will my insurance reimburse for participating in SCI research?

9.1. Coverage for Experimental Technologies (1995)

In this paper in PDF format the authors argue that had insurers, including Medicare, not paid the costs associated with “unproven” technologies in the past, many of the innovations for which American medicine is lauded might not have come to pass.

9.2. Appeal for Experimental Procedures

This article explains terminology to help you overcome the challenges that can arise when your medical needs are not covered by your health insurance.

9.3. Experimental Cure Tough Choices (1999)

Article from the Seattle Times Extra "Experimental cures mean tough choices for health insurers"

10. Websites to learn about SCI research

10.1. The International Campaign for Cures of spinal cord injury Paralysis (ICCP)

The International Campaign for Cures of spinal cord injury Paralysis (ICCP) is a body of affiliated, not-for-profit organizations that are working to fund research into cures for paralysis caused by spinal cord injury. Their "Seeking Repair" section provides information on targets for repair, understanding research, and understanding clinical trials.

10.2. Miami Project to Cure Paralysis

The Miami Project to Cure Paralysis is the world's most comprehensive spinal cord injury research center. The Miami Project's international team of more than 200 scientists, researchers and clinicians take innovative approaches to the challenge of spinal cord injury.

10.3. Christopher & Dana Reeve Foundation

The Reeve Foundation's research programs are developing and delivering treatments and cures for spinal cord injury.

10.4. CenterWatch - Clinical Trials information

Global source of news, directories, proprietary market research, and analysis for clinical trials professionals and patients.

10.5. Mike Utley Foundation

The mission of the Mike Utley Foundation is to financially support an effective function-restoring treatment for spinal cord injuries, to encourage through education that of adopting a rehabilitative lifestyle for the spinal cord injured and a public awareness of spinal cord injuries.

11. Articles and Videos about SCI research

11.1. Spinal Cord Injury Research and the Hope for Cure: Where are we Today? (2013)

2013 Spinal Cord Injury Wellness Summit

Keynote address:

SCI Research and the Hope for Cure: Where Are We Today?

By Daniel Lammertse, MD

Internationally recognized as an expert in SCI rehabilitation, Dr. Lammertse is a Clinical Professor of Physical Medicine and Rehabilitation at the University of Colorado, Denver, and Medical Director of Research at Craig Hospital, where he is co-director of the Rocky Mountain Regional SCI System. In his talk, he lucidly explains the complex issues involved in SCI recovery, reviews the current state of SCI cure research worldwide, discusses the most promising avenues of investigation, and clarifies potential risks of participating in expensive experimental treatments available outside the U.S. Dr. Lammertse's talk was the keynote address at 2013 SCI Wellness Summit, which took place on May 18, 2013 at the University of Washington Medical Center, Seattle.

11.2. Spinal Cord Injury Research Evidence (SCIRE)

The Spinal Cord Injury Research Evidence (SCIRE) is a synthesis of the research evidence underlying rehabilitation interventions to improve the health of people living with SCI. SCIRE covers a comprehensive set of topics relevant to SCI rehabilitation and community re-integration.

The Spinal Cord Injury Research Evidence (SCIRE) project is a Canadian collaboration between scientists, clinicians and consumers in Vancouver, British Columbia and London, Ontario and their respective health centres (GF Strong Rehab Centre, St. Joseph's Health Care), research institutions (International Collaboration on Repair Discoveries, Lawson Health Research Institute) and universities (University of BC, University of Western Ontario).

 

11.3. CareCure Forums - Article Abstracts

The Research Forums lists abstracts of the latest scientific articles on brain injury & stroke, neurodegeneration, multiple sclerosis, neuropathic pain, spinal cord injury, stem cells, and tranverse myelitis. Exchange information about Clinical Trials, Equipment & Services, Doctors & Clinics.

11.4. Hope Through Research (NINDS)

This brochure by the National Institute of Neurological Disorders and Stroke (NINDS) has been written to explain what happens to the spinal cord when it is injured, the current treatments for spinal cord injury patients, and the most promising avenues of research currently under investigation. 

11.5. Research: Stem Cells

Research: Stem Cells, is a brochure produced by Craig Hospital, a Spinal Cord Injury Model Systems Center.  Revised 1/15.

11.6. Stem Cell Therapies

Stem Cell Therapies

Will stem cell therapies be safe and effective for treating spinal cord injuries?
A large number of different cells, including embryonic and adult stem cells, have been transplanted into animals with SCI, and in many cases these procedures have resulted in modest sensorimotor benefits. This review article examines some of the publically available preclinical evidence that some of these cell types improve outcome in animals with SCI. Transplantation of many different types of stem and progenitor cells acutely after SCI enhances spontaneous recovery of function in animals. The common mechanism(s) of this enhanced recovery of function are not well understood, although a range of possibilities are usually cited (including preservation of tissue, remyelination, axon sprouting, glial cell replacement). There is no agreement about the best cell type for transplantation. Transplantation of cells into animals with a long lifespan is important to determine whether or not tumors will eventually form. It will also be important to determine whether long-term survival of cells is required for functional recovery.
Thomas KE, Moon LD.
Br Med Bull. 2011;98:127-42.

How to obtain complete article

You may obtain copies of the complete article through your local medical library or through the University of Washington Health Sciences Library Document Service at 206-543-3441 or http://healthlinks.washington.edu/hsl/docservices/illiad.htm. (There is a fee for this service.)

 

11.7. Survive, Subsist, Succeed: Spinal Cord Injury

Survive, Subsist, Succeed: Spinal Cord Injury

An 80+ minute video presentation by John D. Steeves, PhD, Professor and Founding Director, ICORD (International Collaboration On Repair Discoveries), and UBC and Vancouver Coastal Health, Vancouver, BC.  In this presentation, Dr. Steeves addresses questions about fact vs fiction, near term vs long term in relation to research and provides an overview of the SCI research that has taken us from merely surviving spinal cord injuries—rare before World War II—to thriving with SCI and even the possibility of recovery. He brings over 30 years' experience as a spinal cord researcher to explain and discuss recent experimental treatments for SCI.

This lecture was given on May 20, 2010 at University of Washington Medical Center by the Northwest Regional SCI System, Department of Rehabilitation Medicine, University of Washington.

12. Advocacy Groups

12.1. Cure Paralysis Now

CureAdvocacy is a grassroots organization that believes a cure for paralysis can be achieved in this decade.

12.2. Step Now

The purpose of the site is to explore and develop global plans to aid in the fight for a cure for paralysis.

12.3. Spinal Cord Society

SCS is a large grass roots organization linked by a monthly Newsletter, and thousands of members throughout North America and other countries. Its goal is cure of chronic spinal cord injury paralysis.

12.4. Unite 2 Fight Paralysis

Unite 2 Fight Paralysis is a nonprofit organization dedicated to the education, unification and empowerment of all survivors of paralysis.

13. SCI Statistical sources

13.1. 'One Degree of Separation' paralysis survey 2009

'One Degree of Separation': Paralysis and Spinal Cord Injury in the United States.

13.2. National SCI Statistical Center (At UAB)

The UAB Department of Physical Medicine and Rehabilitation is funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) to operate the National Spinal Cord Injury Statistical Center (NSCISC). NSCISC supports and directs the collection, management and analysis of the world's largest and longest spinal cord injury research database. Organizationally, NSCISC is currently at the hub of a network of 14 NIDILRR-sponsored and 5 subcontract-funded Spinal Cord Injury Model Systems located at major medical centers throughout the United States. In addition to maintaining the national SCI database, NSCISC personnel conduct ongoing, database-oriented research. Many of the findings resulting from these investigative efforts have had significant impact on the delivery and nature of medical rehabilitation services provided to SCI patients.

'Spinal Cord Injury Facts and Figures at a Glance, 2017' is a publication of the National Spinal Cord Injury Statistical Center, Birmingham, Alabama. Much additional SCI statistical data and annual reports can be accessed from this page.

13.3. Annual Disability Statistics Compendium

The 2013 Annual Disability Statistics Compendium is a web-based tool that pools disability statistics published by various federal agencies together in one place. When working on legislative and other matters relating to persons with disabilities, the Compendium will make finding and using disability statistics easier.

13.4. Geography of Disability

The NIDILRR-funded Rehabilitation Research and Training Center on Disability in Rural Communities (RTC: Rural) has published findings from the Geography of Disability Project on their website. The objective of the study was to depict the distribution and demographics of people with disabilities living in rural areas and the services available to them. A number of map formats are available. 

14. Advance Directives (donating your spinal cord for scientific research)

14.1. Miami Project SCI Tissue Bank

The Miami Project requires advance planning if you, or someone you know, chooses to donate his or her spinal cord to tissue research.