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Thread: Registry of SCI people interested in joining trials

  1. #1

    Registry of SCI people interested in joining trials

    Problem: Companies performing trials are unable to find SCI participants.

    Solution: Maintain a database of SCI people who are interested in participating in clinical trials.

    Perhaps a link from this site could lead to a secure site with a standard "application" with useful information needed by clinical trials such as injury level, etc. A standard form could also be distributed to rehab hospitals. When a company is ready to conduct a trial, it can review the database to contact appropriate participants.

    If a database like this could cut off the 3-6 months trials spend trying to find participants, we should help them by providing a list of potential participants who are willing and able. Shortening the clinical trial process by 6 months could mean faster recovery for all of us. It's one way we can contribute to our own cure.

  2. #2

    Registry of SCI

    I truly cannot believe that there are research organizations out there that cannot find SCI participants. All they have to do is look in the phone book for the closest rehap hospital and they will have there fill. Just have them contact me I'll volunteer.


  3. #3

    I Agree

    This is a good idea, perhaps this website could create this sort of database. From what I understand, SCS already has a database where people register for clinical trials, but a database where people could register over the internet would be much more dinamic.
    What good is a database if companies that are looking for patients don't know about them. Probably wouldn't be a bad idea to let these companies know that these databases exist.
    Anyhow, most trials are for acutes, not too likely that any acutes would be registered, but I'm sure that if well planned, we could come up with something to get the word out to recently injured people. Even if it means posting panphlets in hospitals and rehab centers.
    Helping recently injured people and facilitating information about SCIed people to companies WILL help us all.

    I know I'll register!


  4. #4
    Senior Member mk99's Avatar
    Join Date
    Jul 2001
    toronto, canada

    The problem is:

    Almost all these trials are looking for acute injuries. This means that the hospitals & rehab centres play the key and pivotal role as a liason between patient and research.

    We've all gone through rehab. Rule #1: Destroy all hope of ever recovering.

    These people are not spiteful but there is a dreadful communication gap between researchers looking for trial participants and the medical community. I think the onus is on the researchers to communicate properly with the hospital/rehab centres. (or better yet, start taking chronic injuries... shouldn't be as hard to find candidates)

  5. #5
    Senior Member mikek's Avatar
    Join Date
    Jul 2001
    Pompano Bch.,Fl. 33060

    SCS Registry...........

    Last year when I renewed my subscription to the SCS monthly newsletter, I also paid $ 50.oo to have all my data stored on a data base for
    trial participation. Never heard from anyone .....

  6. #6

    do yourself trial by mental exercises

    Mental Exercises Can Improve Muscle Strength

    WESTPORT, CT (Reuters Health) Nov 12 - It is possible for healthy individuals to significantly increase the strength in their finger abductor and elbow flexor muscles through mental training alone, researchers reported Sunday during the Society of Neuroscience meeting in San Diego.

    "Just thinking about exercise can help maintain muscle strength," Dr. Vinoth Ranganathan of the Cleveland Clinic Foundation told Reuters Health.

    Dr. Ranganathan and colleagues enlisted 30 young healthy volunteers between 20 and 35 years old to engage in a program of mental muscle contractions while they refrained from participating in physical exercise. The subjects first focused on how their muscles worked during maximum force exercise training, Dr. Ranganathan said.

    Two groups of ten subjects were then trained to perform mental contractions of either the abductor digiti minimi or the elbow flexor muscles for 15 minutes per day, 5 days a week, for 12 weeks. The control group did not perform mental exercises. The investigators used electromyography daily to ensure that the subjects were not actually moving the muscles.

    Results of electromyography performed at baseline and after training showed that finger abduction strength increased by more than 35% and elbow flexion strength increased by 13.5% in the exercise groups versus controls (p < 0.005).

    Dr. Ranganathan's group found that brain signals were highly visible on triggered electroencephalogram recordings obtained while the subjects were performing mental exercises. Post-training functional MRI showed greater and more focused activity in the prefrontal cortex compared with pre-training images.

    The combined electromyogram and triggered EEG data indicate that strength gains are a consequence of improvements in central nervous system signals to muscle, the investigators suggest.

    A followup study is under way in healthy subjects 65 years and older to determine the efficacy of mental exercise training in an older population, Dr. Ranganathan told Reuters Health. "We then hope to use this in a clinical setting in stroke and spinal cord patients," he said.

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