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United Cerebral Palsy

1825 K Street NW Suite 600 , Washington- 20006
District of Columbia , United States  United States
+1-8008725827 http://ucp.org

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United Cerebral Palsy - Washington

United Cerebral Palsy (UCP) may be one of the largest health nonprofits in the U.S. today, but that was not the case in 1949. In the 1940s, there were not many options for families of and people with cerebral palsy and other disabilities. Faced with fear and a lack of understanding by both the medical community and the general public, individuals with a disability were relegated to second-class status. Medical professionals frequently urged parents to warehouse their children in institutions where they lived out their lives, segregated from the rest of society. Parents who chose to raise their children at home learned that few services and supports were available to help their children lead full, productive lives in the community. With little contact between families of children with cerebral palsy, many parents felt isolated, helpless and alone.

In 1948, Leonard H. Goldenson, then-President of United Paramount Theaters and ABC Television, and his wife, Isabelle, joined forces with prominent New York businessman Jack Hausman, and his wife, Ethel, to improve the quality of life for their children with cerebral palsy and for others like them. The two families placed an advertisement in the New York Herald Tribune to recruit families interested in improving available services to children with disabilities so that families could stay together, and people with disabilities could be part of the community.

Hundreds of parents of children with cerebral palsy and other disabilities responded to the advertisement and joined the Goldenson’s and Hausman’s in their crusade to create an organization to improve service for people with disabilities. It was from this humble, grassroots beginning that UCP was born as a national organization in 1949. Several UCP affiliates opened across the country, quickly establishing the organization. Right at its inception, UCP brought issues about cerebral palsy and other developmental disabilities to the forefront of the national media.

UCP would not be where it is today — assisting thousands of people with disabilities and their families — if it had not been for a group of parents who were committed to pioneering an effort to change the world for their children.

Today, UCP continues to work closely with its affiliates on issues that open doors for people with disabilities. From home ownership to health care reform, inclusive education to competitive employment, UCP has established itself as a leader in the disability community and as a strong voice for individuals with disabilities and their families.

Additional Information

Recently, there was significant attention in the press to a review article by Andres Moreno-De-Luca and colleagues at the Genomic Medicine Institute, Geisinger Health System, and the Department of Human Genetics, Emory University. (See the full article citation below.) The article entitled “Genetic insights into the causes and classification of the cerebral palsies” indicates that there is a growing body of evidence suggesting that more cases of cerebral palsy are caused by genetic or inherited factors than previously appreciated.

It is the authors’ opinion (It should be stressed that this is opinion, not fact.) that genetic factors may account for 70-80% of cases attributed to prenatal causes of cerebral palsy. Furthermore, genetic factors may predispose to certain known risk factors for cerebral palsy, such as premature birth, bleeding or clotting abnormalities leading to stroke, and difficult births. They provide an excellent summary of existing evidence that supports the role of genetics in cerebral palsy.

I asked experts at the University of Adelaide, Australia, who have conducted research on the genetic relationships to cerebral palsy, to comment on this article.“Although the article published in Lancet Neurology by Moreno-De-Luca et al. is important and extensive, to date one cannot yet say that large numbers of CP have a genetic origin. It would be inappropriate to suggest to families with a CP child that there are commercially available genetic tests to ascertain all the possible genetic variations that may or may not be associated with CP.

It will take much more and expensive research to ascertain the percent of CP that has genetic origins and for us to be sure which genetic variations are truly pathogenic and responsible for the CP outcome. So although there are exciting horizons for genetic research in CP we cannot yet offer clinical tests or intervention and must advocate a conservative approach.

According to the Children’s Hemiplegia and Stroke Association (www.chasa.org) constraint-induced movement therapy (CIMT), sometimes called “forced use therapy”, has been used in the adult stroke population for years. Recently, this type of therapy has gained the attention of therapists who work with children who have hemiplegia (weakness on one side of the body due to an injury to the brain on the opposite side).

CIMT focuses on regaining movement on the affected side of the body by restraining the non-affected arm, thus forcing the child to learn to move the affected arm more efficiently and effectively. There is increasing evidence that this therapy may result in positive structural changes in the brain, prompting Brady and Garcia, in an excellent review of CIMT (Dev Disabil Res Rev 2009;15:102-111), to comment that CIMT is an example of an emerging “paradigm shift” in rehabilitation of CNS injury, from an emphasis on compensatory skills to a hope for partial restoration.

Accumulating research reports have generally shown a favorable response to CIMT, although questions remain about what is the critical level of intensity of therapy necessary for a positive effect (how much? how frequently?). As with any new therapy, another important question is whether it is superior to what is already available and being implemented, perhaps at less expense.

A recent article by Wallen and colleagues from Sydney, Australia compared a modified form of CIMT with intensive occupational therapy on activities of daily living and upper limb outcomes in children with hemiplegic cerebral palsy. They concluded from their study that modified constraint-induced therapy is no more effective than intensive occupational therapy.(Dev Med Child Neurol 2011;53:1091-1099).

In a Letter to the Editor (accepted but not yet published by Developmental Medicine and Child Neurology) Dr. Stephanie DeLuca (University of Alabama at Birmingham) and colleagues long involved in CIMT research raise some interesting questions about the Wallen study. An excerpt follows:We raise many serious issues about the [Wallen et al.] study as well as present directly comparative data from a multisite trial of CIMT that we recently completed (and is forthcoming as a manuscript in the Am J Occup Ther, January, 2012). The purpose of the comparative data is to help readers better interpret the magnitude of changes reported among children in the two Wallen et al treatment groups – for an objective outcome (the Assisting Hand Assessment) and a subjective one (parental ratings on thePediatric Motor Activity Log).

What concerns us most is that when clinical trials are conducted in a way that fails to clearly specify the intervention treatment and to document its fidelity of implementation, then readers are at a loss as to how to use the findings. Rigorous clinical trials have clearly agreed upon standards about what constitutes adequate, objective outcome data. Based on the published article, the Wallen et al. study did not meet criteria of a rigorous clinical trial with appropriate primary outcomes.

The field is eager to resolve critical questions about whether Constraint-Induced Movement Therapy (CIMT) works, and for whom it works best, and what format (dosage, constraint) yields the best results. The Wallen et al study is described as though it answers some of these questions. In fact, we judge the form of administration (parent delivered almost exclusively) and the dosage (below 1.5 hr/day) and constraint (a mitt (worn less than 1.5 hr/day) of the so-called “modified” Constraint-Induced Therapy to be insufficient to know if it really WAS CIT.

We think the field needs to develop clear and agreed upon definitions for different therapy approaches, with operational definitions and measures of the delivery of the components of a specified form of therapy. Otherwise, we fear that CIMT – which thus far is one of the most promising evidence-based therapies available for children with unilateral cerebral palsy – may go the way of earlier “popular” therapies that became so ill-defined (such as Neurodevelopmental Therapy – NDT) that it becomes a “discounted” or disrespected therapy, because no one can describe exactly what it is. In our view, use of a short-term form of constraint and only slightly more than a one hour therapy session per week cannot qualify as CIMT!

Children need evidence-based treatments. The field needs a solid, trustworthy database to inform treatment recommendations and the training for therapists who deliver treatments. Wallen et al, unfortunately, failed to clarify or advance the role of CIMT per se. It did, however, perhaps show low dosages of CIMT fail to produce large and statistically significant improvements in function (despite parents liking the intervention and being satisfied with their children’s progress).

This kind of interplay between researchers is very healthy and will lead to a better understanding of the most cost-effective approaches to therapy for cerebral palsy. I encourage parents, therapists, physicians and all other interested in cerebral palsy treatment and research to read the Wallen et al. article and the more complete Letter to the Editor by DiLuca et al that is to follow in Dev Med Child Neurol.

We asked Dr. Wallen to respond to this critique and she kindly furnished the following:Our trial evaluated a modified form of CIMT (modCIT), devised in response to families requesting CIMT which was less intensive than pre-existing models, and therapists who proposed that these models were not clinically feasible within the Australian health services context. We compared modCIT with an intensive block of occupational therapy, arguing that a constraint-based intervention needed to be substantially more effective than the best available service currently offered, in order to justify its additional intensity and intrusiveness.

The statement that modCIT “cannot qualify as CIMT” is disingenuous. What is CIMT? Case-Smith, DeLuca and colleagues1 employed a cast worn 24 hours per day for 18 days during which time children participated in an intervention protocol of either 3 or 6 hours per day. This was followed by a period in which children participated in bimanual intervention.

How do we delineate the effects of CIMT from those of the bimanual therapy or an interaction between the two in this protocol? Diverse CIMT protocols are reported in the literature variously using casts, splints, slings, mitts and even holding to achieve constraint for 1 to 24 hours per day over periods from 9 days to 8 weeks. Which of these options is CIMT? Case-Smith, DeLuca and colleagues very accurately stated that “consensus has not been reached on the differential effects of dosage (or intensity) of therapy or a minimum threshold to produce significant effects” (p.16). Each study adds its own unique contribution to the ever-increasing and complex knowledge base.

Dr DeLuca stated that our trial “did not meet criteria of a rigorous clinical trial with appropriate primary outcomes.” In our response to the Letter to the Editor of DMCN we provide evidence that the Canadian Occupational Performance Measure is valid for use with young children with cerebral palsy and reiterate that we specifically chose to use this measure as it individualizes and prioritizes outcomes.

Furthermore, it is consistent with family-centred care, a fundamental philosophy of contemporary practice. We take this opportunity to further highlight the aspects of our study which demonstrate methodological rigor: randomisation with allocation concealment, blinding of raters and data analysis, adequate sample size determined by sample size calculation, a priori selection of primary and secondary outcome measures and endpoints, data analysis completed according to principles of intention to treat and so on.

Specialities

Stem cell therapy is promising yet there is misunderstanding regarding the current state of its readiness for treatment of cerebral palsy. There are only two institutions in the United States conducting carefully designed research trials of stem cells in cerebral palsy but there are a number of clinics outside the US offering this therapy.

Recently Dr. Luigi Titomanlio and colleagues and colleagues published an excellent review of stem cell therapy for neonatal brain injury, one cause of cerebral palsy (Titomanlio L et al. Ann Neuorl 2011:70:698-712. As this review was intended for a medical audience, it is somewhat technical. However, it does explain the many aspects of stem cell therapy and summarizes the current state of knowledge regarding their use. I asked Drs. Gordon Worley and Jessica Sun from Duke University to comment on this article. Afterwards, I will provide less technical comments on stem cell treatment in cerebral palsy and list several excellent on-line sources of dependable information.

This European review of stem cell therapy for neonatal brain injury is written for physicians interested in learning about where we stand now. Background about the five different types of stem cells that are used in animal experiments to treat neonatal injury is provided. These types are neural stem cells, induced pluripotent stem cells, mesenchymal stem cells harvested from bone marrow, and umbilical cord blood stem cells. Each has some advantages and some problems for cell therapy, as discussed in the paper.

Strategies for use of stem cells in newborns are presented. Obstacles that need to be studied are cell dose, timing of transplantation, route of administration (directly into the brain or other), and assessment of mechanism of action. An issue that needs to be determined by animal studies is whether stem cells after injury improve outcome (when they have been shown to) by “paracrine” effects, that is, by secretion of growth and differentiation factors that stimulate endogenous regeneration, or by engraftment (the stem cells themselves forming the neural cell elements). Potential complications of engraftment of some kinds of stem cells are neuroblastoma (with human neural stem cell transplantation), teratoma (with embryonic stem cell transplantation), and acute and chronic rejection (with neural stem cell transplantation).

Clinical trials of stem cell therapy in neonates with brain injury were reviewed. All studies are preliminary. The authors conclude that “based on animal models of hypoxic ischemic encephalopathy, human cord blood cells and mesenchymal stem cells (MCS) may be the most promising stem cells, as they are effective and potentially available for human studies. Human cord blood stem cells have advantages over MCS that may support their use for neonatal insults.”

We at Duke are conducting a clinical trial to evaluate the effectiveness of an intravenous infusion of a child’s own umbilical cord blood in young children with cerebral palsy, ages 12 to 72 months. The safety and feasibility of an intravenous infusion of autologous cord blood in children with acquired brain injuries was demonstrated in a “lead up study” to the clinical trial. The trial is a double-blind placebo controlled study, with crossover at one year. The placebo infusion looks and even smells like the cord blood infusion.

Three challenges we have faced in designing a robust trial are: parents willingness to have their children randomized to placebo treatment; defining eligibility criteria that allow assessment of endpoints without unduly limiting enrollment and assessing change due to cellular therapy above what is expected in the development trajectories of children with CP. Gross motor, fine motor, cognitive, and speech and language capabilities are assessed objectively with accepted measures. MRI with DTI and tractography provide objective measures of neuroplasticity. Quality of life is also assessed.

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