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Thread: CRF statistics versus the NSCISC

  1. #1
    Senior Member khmorgan's Avatar
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    CRF statistics versus the NSCISC

    I keep seeing different numbers of SCIs in the U.S. quoted, i.e. the CRF estimates the number at 1.2 million whereas the National Spinal Cord Injury Statistical Center (NSCISC) estimates the number at 231,000 to 311,000.

    So, I sent the NSCISC a note asking for clarification. This is their response:

    You raise an important issue regarding the study sponsored by the Reeve Foundation. Basically, the authors made a reasonable attempt to count spinal cord injuries while omitting other spinal conditions such as disk herniations, pinched nerves, degenerative joint disease, etc. Unfortunately, the results make clear that they were unsuccessful in that attempt. Once you look past the top number and begin to consider the characteristics of the people they counted, it is clear that their results must be counting conditions such as those I mentioned that are not really what we would consider to be a spinal cord injury. Here are some examples:

    The Reeve study estimates that 50,000 spinal cord injuries occurred in the past year. This is 4 times higher than population-based studies sponsored by the CDC that include all hospitalized cases occurring in several states around the country. The authors suggest that the overage is people who are never hospitalized but rather see a doctor and perhaps get some outpatient therapy, but of course this makes no sense. Anyone with an acute onset neurological loss would be hospitalized at least briefly to evaluate the extent of injury and establish the appropriate treatment.

    The average duration of injury in the Reeve study is only 14 years. Since spinal cord injury is incurable, the average duration must equal the life expectancy of new injuries, and nobody believes that the life expectancy for a newly injured person with spinal cord injury is only 14 years. The Reeve study found very few persons with injuries of at least 20 years duration such as yourself, and the numbers of persons 2 years post-injury, 3 years post-injury, etc. rapidly declined, suggesting that these injuries are resolving, which again makes no sense.

    The Reeve study found 39% of people with spinal cord injuries were women, which is twice the figure of any other study ever published, and found 30% were the result of on-the-job injuries, which is 3 times the figure in the model systems database, again suggesting low back injuries that are not really spinal cord injuries.

    They also found very few neurologically complete injuries, which is another sign that they don't have the right patient mix.

    The bottom line is that nobody familiar with the large body of epidemiologic research on spinal cord injuries here or elsewhere in the world really believes the Reeve study numbers. The authors have offered no plausable explanations for the internal results of their study. They simply dismiss all other studies as being inaccurate. Unfortunately, the Foundation has a political agenda that is advanced by large numbers, and so they are going forward with dissemination of their study results, and we are left to pick up the pieces and deal with this misinformation.

    I hope this explanation is helpful.

    Sincerely,

    National Spinal Cord Injury Statistical Center

    I know none of this really matters with respect to finding an effective treatment. It's just sad that we can't even quantify the problem within 100,000 people.

    Of course, the last thing we need is an accurate count at the expense of an effective treatment.

  2. #2
    I have been wondering the same question some time ago... I was never convinced by the data of CDRF & I am not surprise by the answer of NSCISC
    In God we trust; all others bring data. - Edwards Deming

  3. #3
    Ouch.

    Wise, can you weigh in on this?

  4. #4

    CDRF Response

    I am quite familiar with the study that was sited . I was concerned about the misrepresentation and interpretation of the studies data so I reached out to the Senior VP at the Reeve Foundation who initiated the study. Below is the Reeve Foundation response. Let me know if anyone wants further clarification and I will try to get it for you.

    The study commissioned by the Reeve Foundation mentioned in this thread was initiated to determine the prevalence and demographics of a mobility-impaired population in the United States defined by functional limitations based on the definition used by the World Health organization. The methodology used in this survey was population-based sampling using random digit telephone dialing of over 33,000 households. This methodology, recognized as the “criterion standard in research” (Gloria Krahn, Ph.D., Michael McCarthy, MSW, Dean Westwood, MSW and Laurie Powers, Ph.D. Evaluation of an Innovative Methodology to Recruit Research Participants with Spinal Cord Injury Through Durable Medical Equipment Suppliers. Arch Phys Med Rehabil, Vol 89, July 2008, 1341), is used widely in public health research.

    The complete report on the survey can be found at http://www.christopherreeve.org/site...Separation.htm

    A report on the methodology used for the survey can be found at
    http://cdd.unm.edu/dhpd/images/Techn...%204-16-09.pdf

    We are all committed to getting the most accurate numbers we can for prevalence of physical disabilities, including spinal cord injuries, but this thread contains a lot of misinformation that needs to be corrected.

    The poster wrote that “The average duration of injury in the Reeve study is only 14 years. Since spinal cord injury is incurable, the average duration must equal the life expectancy of new injuries, and nobody believes that the life expectancy for a newly injured person with spinal cord injury is only 14 years.”

    This statement is incorrect – it did not measure life expectancy. Respondents to the survey reported an average of 14 years since their spinal cord injury. Years since onset of injury and life expectancy are not the same things. While approximately 26% of the cases reported that they were 20 years or more post-injury and almost 50% reported 10 years or more post-injury, neither figure should be interpreted as life expectancy. They are a measure of how long ago the injury had occurred at the time the survey was administered in the summer of 2008.

    The statement “They also found very few neurologically complete injuries, which is another sign that they don't have the right patient mix” is also incorrect.

    We did not measure neurologically complete and incomplete and the poster is incorrect to equate this with the construct we used - “completely unable to move extremities.” We found that 13% of those with a spinal cord injury were completely unable to move and 35% of those with a spinal cord injury reported having “a lot of difficulty” moving their extremities. This total represents nearly half (48%) of all spinal cord injuries.

    “The Reeve study found 39% of people with spinal cord injuries were women, which is twice the figure of any other study ever published, and found 30% were the result of on-the-job injuries, which is 3 times the figure in the model systems database, again suggesting low back injuries that are not really spinal cord injuries.”

    The poster’s assertion that the Reeve study found the number of women with spinal cord injury is more than twice as many as any other study is wrong. According to Phil Klebine on the Spinal Cord Injury Information Network’s website, "Women represent about 20% of all new cases each year, but they make up more than 20% of the SCI population because women generally live longer than men. In fact, women make up an estimated 25% to 30% of the SCI population." - Spinal Cord Injury Information Network: http://www.spinalcord.uab.edu/show.asp?durki=59843

    Women represented 39% of the spinal cord injured population in the Reeve study while their own figures say as high as 30%. Our margins of error at 95% are 38.5% to 39.3%. The UAB figures don’t have a margin of error, but the results are not that far off. In any case, this is not twice the figure of any other study ever published.

    “The Reeve study estimates that 50,000 spinal cord injuries occurred in the past year. This is four times higher than population-based studies sponsored by the CDC that include all hospitalized cases occurring in several states around the country.”

    We never indicated the number of spinal cord injuries in a single year. We do not know where this figure came from but it was not from our study. The poster clearly doesn’t understand the difference between incidence -- the rate of occurrence of new cases in a given time period – with prevalence, which is a measure of the total number of cases of a condition in a population. The Reeve study did not make any claims about incidence, and the reports were very clear on this point.

    “ The Reeve study found very few persons with injuries of at least 20 years duration such as yourself, and the numbers of persons 2 years post-injury, 3 years post-injury, etc. rapidly declined, suggesting that these injuries are resolving, which again makes no sense.”

    The poster simply misrepresents the findings of the population study here. The study found that 26.8% of spinal cord injury cases reported that they were more than 20 years since onset and 49.3% of cases reported greater than 10 years since onset.

    The Reeve Foundation study was conducted with funding and participation from the Centers for Disease Control and Prevention, the Center for Disability and Development at the University of New Mexico, and ICR (International Classification Research, a nationally-recognized polling firm) and was conducted with extreme caution to not count responses that did not specify a spinal cord injury. Back injuries, slipped disks, lower back injuries and similar conditions were not counted.

    Working with our many partners in and outside of government, the Foundation is interested in finding out what accounts for the differences in prevalence estimates from this population-based study and previous limited local or statewide registries used in the past. Since there is no national systematic registry of all cases of spinal cord injuries - the only way to get an accurate count using registry-based data - we must rely on estimates from other methods of counting.

    The Foundation and its partners are initiating a multi-year research program that will look for these reasons, and will also conduct more detailed research on financial, health-related quality of life, rehabilitation and other issues related to paralysis, including spinal cord injury . We look forward to sharing the results of these studies as they move forward.
    Every day I wake up is a good one

  5. #5
    But does the CDRF study include ALL FORMS of paralysis (stroke, TBI, MS, ALS, MD, etc.), not just SCI????

    (KLD)

  6. #6
    Quote Originally Posted by SCI-Nurse View Post
    But does the CDRF study include ALL FORMS of paralysis (stroke, TBI, MS, ALS, MD, etc.), not just SCI????

    (KLD)
    Yes but I believe these are the stats just for SCI. The report is broken into sections with SCI being a section of its own as well as part of the total number.
    Every day I wake up is a good one

  7. #7

    1.28 miilion SCI in the US!!

    Here is reputable mention of the higher number that everyone should use as the NSCISC stats are way too low.........they only sample a few bonafide SCI centers, but not everyone enters through a bonafide sci center!!!

    Introduction Top

    Traumatic spinal cord injury (SCI) results in partial or complete paralysis along with sensory loss below the level ofinjury. The pathology of SCI is characterized by the loss of neurons and oligodendrocytes, axonal injury, and demyelination/dysmyelination of spared axons. Therapeutic transplantation of stem cell populations may promote functional recovery by providing trophic support, modifying the host environment to create a permissive environment for endogenous regeneration/repair, or by replacing neurons and/or oligodendrocytes [1], [2].

    SCI therapies can target acute, sub-acute, or chronic time points post-injury. The continuum from acute to chronic injury both in animal models and clinically is defined by the transition from a dynamic to a relatively stable injury environment, and when behavioral recovery reaches a plateau [3], [4], [5]. In rodent contusion injury models these criteria are met beginning at approximately 30 days post-injury (dpi) [3], [4], [5]. There are over 1,275,000 individuals living with chronic SCI in the U.S. alone (Christopher & Dana Reeve Foundation Paralysis Resource Center); thus, a chronic transplantation model is highly clinically relevant.

    Several studies have investigated chronic SCI models using whole tissue grafts and peripheral nervous system (PNS) cells. Transplantation of fetal spinal tissue, fetal brain cortex, olfactory ensheathing cells (OECs), peripheral nerve grafts, and Schwann cells after SCI have all been shown to improve locomotor recovery [6], [7], [8], [9], [10], [11], suggesting that the chronic post-injury period may be a feasible target for repair.

    In contrast, the few studies that have compared sub-acute and chronic transplantation of CNS cell populations such as human oligodendrocyte progenitor cells (OPCs) and mouse neural stem cells (NSCs) in chronic SCI models have not reported improved locomotor recovery [12], [13]. Human OPCs transplanted 7 dpi survived and promoted locomotor recovery; however, at 10 months post-injury, OPCs survived but failed to improve locomotor recovery [12]. Mouse NSCs transplanted 2 weeks post-SCI survived and improved locomotor recovery; however, at 2 months post-SCI, NSCs neither survived nor improved locomotor recovery [13].

    Thus, while whole tissue grafts and PNS cells have shown some capacity for chronic stage repair (≥4 weeks post-SCI in rodents), CNS cell populations have thus far failed in the chronic setting. These studies suggest that the mechanism of cell transplant-mediated repair, the properties of specific cell transplant populations, and/or the microenvironment of the injured niche during the acute, sub-acute, and chronic periods may influence the potential to impact recovery post-SCI. Defining the potential window for successful engraftment and recovery in animal models with specific cell populations, particularly CNS populations, is therefore a critical step to developing therapeutics for chronic injuries...........

    Our results reveal that hCNS-SCns have the ability to survive, migrate, differentiate, and promote improved locomotor recovery when transplanted in the early chronic SCI microenvironment.
    Desirée L. Salazar1,2,3¤, Nobuko Uchida4, Frank P. T. Hamers5, Brian J. Cummings2,3,6#, Aileen J. Anderson1,2,3,6#*
    1 Department of Anatomy and Neurobiology, University of California Irvine, Irvine, California, United States of America, 2 Sue and Bill Gross Stem Cell Research Center, University of California Irvine, Irvine, California, United States of America, 3 Reeve-Irvine Research Center, University of California Irvine, Irvine, California, United States of America, 4 StemCells, Inc., Palo Alto, California, United States of America, 5 Rehabilitation Hospital Tolbrug, 's Hertogenbosch, The Netherlands, 6 Department of Physical Medicine and Rehabilitation, University of California Irvine, Irvine, California United States of America

    http://www.plosone.org/article/info%...72#authcontrib

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