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Thread: CRPA Synopsis

  1. #1

    CRPA Synopsis

    UPDATE: The Christopher Reeve Paralysis Act is now listed in Thomas. The House bill number is HR 1554. The Senate bill has not yet appeared in Thomas.

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    The last two years have presented us with challenges when it came to getting the CRPA passed. With the passing of Christopher Reeve, a small but important portion of the CRPA was passed as the Research Review Act of 2004.

    This year, starting with the rally, we will be trying again. It will be important to know the ins-and-outs of the bill. Since it has yet to be introduced, we can only guess that its contents will be similar to the one introduced last session.

    Let's begin with what the Research Review Act of 2004 accomplished: The Director of the NIH was given a mandate to give a report to Congress on how the Roadmap for Medical Research has helped bring medical research into the new century, so-to-speak, with a particular interest in paralysis and spinal cord injury research research. Specifically, has the Roadmap for Medical Research improved multidisciplinary research? Has paralysis research benefited from the research consortia with respect to advancing treatments, developing new therapies, or collaborations on clinical trials?

    From the Office of Legislative Policy and Analysis:

    P.L. 108-427, the Research Review Act of 2004, requires the National Institutes of Health (NIH) to submit an NIH Roadmap for Medical Research progress report to Congress. The bill also incorporated a component of an earlier bill, the Christopher Reeve Paralysis Act, requiring NIH to prepare a report describing NIH Roadmap efforts with respect to spinal cord injury and paralysis research.

    The Roadmap for Medical Research is not a congressional Act. The Roadmap was conceived in May 2002 by the Director of NIH to identify major opportunities and gaps in biomedical research that the Agency must address in order to make the greatest impact on the progress of medical research. Developed with input from more than 300 nationally recognized leaders in academia, industry, government, and the public, three NIH Roadmap themes emerged: New Pathways to Discovery, Research Teams of the Future, and Re-engineering the Clinical Research Enterprise.

    Under section 2, subsection (b), the report must be submitted to the House Committee on Energy and Commerce and Senate Committee on Health, Education, Labor and Pensions no later than February 1, 2005.
    Results from the report will likely be used as a basis for determining the viability and potential effectiveness of the CRPA. If we can get a copy of this report [check with Bilirakis's office], it would be enormously helpful.

    The CRPA has four parts that consist mostly of building research consortia and ensuring coordination and communication between members of the consortia; these consortia will help reduce or eliminate the unnecessary duplication of research. The first part focuses on enhancing communication between the various NIH agencies when it comes to basic and translational research, while the second does the same across a subset of NIH agencies that focus on rehabilitation and clinical trials. The importance of this second part cannot be overlooked. Setting up a clinical trial network is important for a number of reasons, including the following two that Wise mentioned:

    Standardizing neurological examinations. Over the coming 6 months, we have to make sure that the participating centers are able to carry out standardized neurological examinations. This is no small task and it must be a continuing effort. Every 6 months, we will be re-training and re-testing clinicians in the centers, to make sure that they carry out the examinations reliably. I am sure that some of the investigators participating in the workshop are thinking to themselves that this is not going to be as easy as they thought.

    Treatments. This is our next big task, to identify therapies that can be reliably produced and consistent across centers. For example, there is currently no adequate source of cells for transplantation across centers. A few of the centers are producing cells of their own from fetal or adult sources. Many of the centers don't have that capability and we must find some way of ensuring a high-quality and consistent source of cells. There will be much work ahead to make sure that the therapies that we would like to test are ready for human clinical trial.
    An important thing to note about training a clinical trial network is the standardized neurological examinations Wise mentioned. Specific standards will be drawn up for examining the various aspects of paralysis. There will likely be standard measures of strength, pain, function, and sensation that can be used across all forms of paralysis, ensuring that everyone suffering from paralysis will benefit from the network, from ALS to Guillain-Barre to MS to SCI to TM.

    Continuing on, the third section of the CRPA focuses on quality-of-life and care improvements, as well as providing funds for states to add a data collection network relating to paralysis. This section also aims to provide better caregiver education and information on preventing secondary complications, with an additional focus on making our communities more accessible to those with paralysis.

    Finally, the fourth section brings the Veteran's Administration into the mix of NIH agencies across the prior three parts. Allowing the VA and the PVA to work hand-in-hand with researchers and rehab therapists will be helpful in testing new therapies, reducing research and clinical trial costs, helping our veterans, and a number of other things that currently escape me.

    In summary, the CRPA, as proposed last session, will likely be retrofitted to insert the necessary language to integrate with existing programs like the Roadmap to Medical Research. Doing so would allow the paralysis community to tap into an existing source of funding, thereby reducing the total amount of additional funding required to get it off the ground. With the new era of "fiscal responsibility," the reduced costs will be an attractive option.

    To the best of my knowledge, everything except my predictions in the summary are accurate. Possibly not complete, but hopefully sufficient.

    -Steven

    [This message was edited by Steven Edwards on 04-15-05 at 10:28 AM.]

  2. #2
    CRPA 2005


    Christopher Reeve Paralysis Act


    March 21, 2005


    Read the Christopher Reeve Paralysis Act Summary of Legislation



    The Christopher Reeve Paralysis Act
    Summary of Legislation

    The Christopher Reeve Paralysis Act (CRPA) will be introduced in both the House of Representatives and the Senate on Tuesday, April 12th. The CRPA is non-controversial and has strong bi partisan support, including Senators Tom Harkin (D-IA), Arlen Specter (R-PA), Ted Kennedy (D-MA), Lindsay Graham (R-SC), Hillary Clinton (D-NY), and John McCain (R-AZ); and Representatives Michael Bilirakis (R-FL), Sherrod Brown (D-PA), Mary Bono (R-CA), and Jim Langevin (D-RI).

    The Basics:
    This bill is primarily about two things: advancing collaborative research in paralysis and improving the quality of life today for people living with paralysis and mobility impairments from any cause -- stroke, ALS, spinal cord injuries, and others. The CRPA encourages coordination of research to prevent redundancies and hopefully hasten discovery of better treatments and cures and, as importantly, to improve the daily lives today for those living with paralysis.

    Why Now:

    Despite strong bi-partisan support, the CRPA did not pass in Christopher Reeve's lifetime. However, to help all of the current and future individuals with paralysis, we need join together and redouble our efforts to support his vision and pass the legislation to honor his memory.
    The tenants of the legislation are in-line with the initiatives advanced by this Administration: coordination, collaboration, and a reduction in research redundancies.
    During financially difficult times, the CRPA advances mechanisms to more efficiently spend current dollars.
    The CRPA has been labeled a model program to better enhance current programs with an eye to the future.
    Millions of individuals with paralysis and their families are counting on us!
    What Does the Bill Do:
    The CRPA has four components that support and enhance paralysis research, rehabilitation, and quality of life programs.

    Title I Paralysis Research. Expands research on paralysis at the National Institutes of Health (NIH). This centers on encouraging collaborative research - connecting scientists doing similar work to enhance understanding and speed discovery of better treatments and cures.
    Title II Paralysis Rehabilitation and Care. Builds on research to enhance daily function for people with paralysis including a Clinical Trials Network to measure effectiveness of certain rehabilitation tactics and encouraging shared findings on paralysis to improve rehabilitation.
    Title III Improving Quality of Life for Persons with Paralysis and Other Physical Disabilities. Works with the Centers for Disease Control and Prevention (CDC) to improve the quality of life and long-term health status of persons with paralysis and other physical disabilities.
    Title IV Basic Rehabilitation and Health Sciences Research: Utilizes the Veteran's Health Administration facilities to improve paralysis research by tracking data within the world's largest system of hospitals.

    More information:

    Title I
    The bill expands research on paralysis at the National Institutes of Health (NIH). The NIH Institute that primarily oversees paralysis research is the National Institutes of Neurological Disorders and Stroke (NINDS). The bill focuses on:

    Collaborative research through the development of Christopher Reeve Paralysis Consortia; a style of research that has been successfully funded through the CRPF; and
    Multi-disciplinary consortia research; improving communication between scientists researching spinal cord injury, traumatic brain injury, and stroke to eliminate redundancy.
    Title II
    Rehabilitation is vital to the health, treatment, and activity level of people with paralysis. The bill calls for research to enhance daily function for people with paralysis including:

    A Clinical Trials Network to measure research outcomes that improve mobility, prevent secondary complications, and develop improved assistive technology; and
    Encourages shared clinical and scientific findings on paralysis to improve rehabilitation.
    Title III
    The bill will develop unique programs at the CDC to improve the quality of life and long-term health status of persons with paralysis and other physical disabilities, including:

    Working with the States to develop coordinated services to assist persons living with paralysis; and
    Providing grants to non-profit private health and disability organizations to inform the public on paralysis, improve access to services, and integrate life with paralysis into society.
    Title IV
    The bill utilizes the Veteran's Health Administration facilities to improve paralysis research by tracking data within the world's largest system of hospitals. This would identify best practices; define existing practice patterns and outcome measurements; and improve patient outcomes associated with improved health related quality of life.

    "A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles"....C. Reeve 1998


  3. #3
    Thanks for the posting the article, cheese. I must have missed it.

    The overview presented below appears to be pretty much in line with the one presented last session. I will be interested to see what funding source is listed in the language of the bill this time. As you know, last session's only requested that the Director appropriate funds as he saw necessary. I think the funding source/s will be a sticking point this year.

    -Steven
    ...only one may enter here... one whose worth lies far within

  4. #4
    Senior Member Leo's Avatar
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    thanks cheese,

    "All you have to decide is what to do with the time that is given you."
    Gandolf the Gray

  5. #5
    Thank you Cheese and Steven.

  6. #6
    The bill is now listed in Thomas. The legislation does take advantage of the Roadmap for Medical Research to accomplish the tasks laid out in the first section.

    -Steven
    ...like a diamond, in the rough

  7. #7
    Cheese...........
    I'm so glad we met.

    Take your hands off my MOJO


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