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Center for Cerebral Palsy Research
Frequently Asked Questions
We have been studying hand function in cerebral palsy since 1991, and began developing and testing interventions based on this knowledge in 1997. Since then we have had over 250 children participate in our studies. Our staff consists of physical and occupational therapists, a neuroscientist, psychologist, and consultants include a certified social worker and pediatric neurologist. We are committed to improving the lives of children with cerebral palsy, and are sensitive to the needs and interests of children. Thus all our activities are conducted in the most child-friendly means possible. We know that efficacy depends on how we engage children rather than the use of restrictive devices on the unaffected hand.
Our program differs from most other CP treatment camps in that we do not simply take existing therapies (PT and OT) and apply them more intensively. Rather, we have built our treatment models from the the ground up using theoretically defensible ingredients gleaned from the basic neurosciences, child development and motor learning disciplines. We are not trying to prove that "our method" works or is the only or best way. Rather, we are committed to evidence-based models of medicine, and we are constantly revising and improving our treatments and testing their efficacy. We regularly present these findings to the clinical community and publish them in peer-reviewed journals so that others can build from here. Therefore, participating may not only help your child, but may also help us improve standard care.
PARTICIPATION FOR CHILDREN WHO QUALIFY IS FREE! While we incur significant costs, we rely on the volunteer work of trained graduate students to make it cost-effective. We have also received grants and donations to help us defray these costs.
Thus far, Constraint-Induced Therapy (CIT) and Hand-Arm Bimanual Intensive Therapy (HABIT) have been shown to be beneficial across the children we have tested, and most participants have been delighted with the outcome. Nearly all children do show improvements, and part of our screening project involves selecting participants who from our vast experience are deemed likely to improve. Improvement may be dependent on: the level of impairment, the amount of practice that occurs during the intervention, and the amount of practice using the involved hand and arm that occurs at home. Minimally, you can expect that your child will have fun participating.
Both CIT and HABIT have been shown to be efficacious. In fact, our findings to date suggest equal efficacy although our current work is aimed at understanding any subtle differences should they exist. It is possible that for a specific child, one may be better than the other depending on age, level of hand impairments, and focus. Presently we are examining this possibility.
No. We were the first to test in in children with hemiplegia starting in 1997 and have had more than 200 participate in our constraint program. However, we modified it significantly from the adult (casting) model to make it as child-friendly as possible, and use a removable cotton sling instead. We believe that CIT has an important role in rehabilitation, but we do not believe it is the "be all, end all approach". We think it can be better, and there can be alternatives.
We understand. It is a personal philosophy whether to have your child participate in a CIT treatment, and we respect your decision either way. Note that it does not have to be provided with casts or in an invasive manner. Dr. Gordon participated in an international concensus on pediatric CIT in 2012. The concensus was: regardless of claims, there is NO EVIDENCE THAT ANY ONE APPROACH IS SUPERIOR TO ANY OTHER APPROACH because approaches have never been directly compared! In the absence of such evidence, we choose to conduct CIT in the most child-friendly way possible. Nearly all children enjoy participation. Even if one approach were better, CIT can be performed multiple times during childhood (and adulthood) with added benefit. So why aim for anything other than an enjoyable experience that can be done again and again as needed? Nevertheless, we initially developed HABIT as an alternative without use of a restraint.
We wish all children could participate! However, we conduct our treatment camps in the context of a research study. Participant selection is based on the likelihood a child will benefit from participating so as not to waste the time of the family. Also, we need to be able to measure changes that occur, which depends on the age, cognition, and severity of impairment. Our criteria are meant to maximize the chance that your child will benefit if he/she qualifies. Currently, the ages for recruitment into the upper extremity study are 6 years - 17 years, and the ages for recruitment into the upper/lower extremity study are 4 years - 17 years. The intervention is fairly intensive and is designed to be child-friendly for these ages. However, we may adapt the design to be more appropriate for younger children, so please contact us if you have a child with hemiplegia of any age.
Currently the ages for recruitment into our studies are 4 - 17 years. The intervention camps are fairly intensive and are designed to be child-friendly for children above 4 years. We will be beginning an EARLY TRACKING AND INTERVENTION project in the near future where we follow development of hand function from diagnosis until ~18 months of age, and subsequently provide advice and early treatment. Please contact us if you are interested.
No. It simply means that the way we deliver the services may not be optimal for your child, or that we won't be able to capture changes based on our measures at the current moment. Depending on the child, there is still a good chance that he/she would benefit if the services are delivered in an alternative manner elsewhere. Additionally, it is encouraging that a number of children who did not initially qualify for our studies have worked with their therapists and families to subsequently gain sufficient hand function to benefit from our camp a year or several years after the initial prescreening.
No. We view the intense treatment as creating a window of opportunity. Subsequent use and practice at home would be required to retain any improvement if seen. Thus, we train parents with some basic strategies to continue to build on what we achieve.
These series of studies have been designed and funded to examine the efficacy of this intervention. At this point, information about the intervention is still being collected and assessed in order to determine if there are changes in involved hand and arm function as a result of a child receiving this intervention. Therefore, we do not currently recommend that it be offered as a therapeutic technique. Therefore, we do not provide training to therapists or parents outside the context of our study. Having said that, there are many groups who do charge for similar services and we have heard that parents were satisfied in many cases.
No. While we have PTs and OTs on staff and there are some similarities, we have developed the intervention from the ground up based on principles of neuroscience and child psychology. We are committed to translational research on evidence-based practice. Intensity is a key component, but structured practice is equally important.
Participation is fun! To the child, it is largely play and most children adapt quickly and would like to return (many have!). For such intensive therapy to work, we need to make the environment as enriched as possible.
More than 250 children have been involved in interventions for these studies to date, and no one has had any ill effects. It is designed to be child-friendly and fun. However, it can be frustrating and the likelihood of tolerance is determined during screening. We work closely with parents to determine if their child should continue if it is difficult.
Typically, the interventionists are graduate students at Columbia who volunteer their time to learn and work with children. Many are already physical or occupational therapists, but all are well-trained and supervised by experienced staff (including very experienced physical/occupational therapists, psychologists and neuroscientists). There will be at least a 1-1 ration of interventionists per child despite being held in a day camp setting. We are fortunate to have such a bright and dedicated skill set to help shape our interventions and provide the highest quality experience possible.
No. A misconception is that the more restrictive the restraint, the better the outcome. All evidence to date indicates that the important ingredient is the quality of the treatment, not the restraint. Too much restriction during early development could even be harmful. Thus we feel there is no reason to use casts, which are uncomfortable and potentially psychologically invasive. Instead, we use a cotton sling which is only worn during the times the children are engaged in activities. Children almost always adapt quickly to wearing this type of restraint, and we engage them in age- and skill-appropriate activities. Thus they feel they have some control, and we believe it is what we do to engage the children that determines efficacy.
Any restraint has the potential to be invasive. By engaging children in activities we can be certain they will succeed and building confidence while having fun, our participants rarely resist wearing the cotton sling. We monitor this carefully.
Surprisingly, we get this question/concern frequently. Ask your child's therapist for studies substantiating this claim! Dr. Gordon has a Ph.D. in Neuroscience and Pediatrics from the Karolinska Institute (where the Nobel Prize winners in medicine are selected). He conducts research in, and teaches graduate courses about, neuroplasticity. These treatments are designed based on everything we know about how the brain best responds to practice. Highly experienced physical and occupational therapists supervise the treatments whereby movements are selected that work against the child's specific impairments. Thus far, our results have been extremely encouraging.
Our work has shown good efficacy using this approach. There is no research to date suggesting differences in outcome between types of restraints, including slings, casts and mitts. In fact, positive results have been demonstrated for each of these. Thus, efficacy is likely related to the quality of treatment, which is what we aim for. Even if a cast were more effective, it is less child-friendly which we think does matter. Importantly, these are not one-time therapies, but instead should be viewed as part of long-term pediatric care. We have shown additive effects of administering these treatments multiple times. Thus, why would one want to risk discomfort and side-effects for unsubstantiated claims that wearing a cast 24/7 is better?
The child wears the sling only during the intervention time, for safety and to be child-friendly. Caregivers are asked to have the child practice with his/her involved hand for one hour daily during the intervention, and two hours daily for six months after the intervention is finished.
The intervention time for the CIT and HABIT study is 6 hours/day for 15 days = 90 hours.
Unfortunately, we are a research facility, and thus we are not able to offer these therapies on a fee-for-service basis.
There is no cost for the intervention if your child qualifies for participation in a study. This is because we receive grants and donations from generous patrons.
For stroke, it depends on the age of occurrence. Presently, we do have a study researching the efficacy of HABIT in children who have had a hemispherectomy. Contact us if you are interested in participating! We currently do not have any studies researching traumatic brain injury. However, if you have a child with this condition, please contact us as we may do so in the future.
Unfortunately, you may not choose which intervention your child will receive as this would violate our scientific randomization process. Most parents have been happy with the outcome regardless of which intervention their child participated in.
Each study answers a research question but typically generates several more questions. There is so much more to learn about the ingredients and dosages of treatment necessary to elicit meaningful changes in hand function and quality of life. These are essential to further develop and improve evidence-based practice.
There is often a wait list so the earlier you contact us the better. We typically run camps once a year during the summer school recess.
Priority is given to people already on the wait list as well as local participants (as we want to help the NYC community). However, since we are conducting a randomized trial, we often randomize in pairs or small groups of children of given ages and hand severity. Thus, priority is sometimes given if a child meets certain criteria to match another child. Again, contacting us early is best.
A number of children have participated in our programs more than once, if we are running a different clinical trial. Please contact us if you are interested!
Participants have been able to arrange free local transportation through Access-a-Ride if planned in advance. We may also be able to provide limited scholarships to local participants who are eligible to help defray the cost of transportation or babysitting for other children due to the generous support of donors and the CVS Corp.
Yes! In fact, we have had participants from as far away as California, Greece, Ireland, Brazil, and Chile. However, please note that it would likely require several trips to our laboratory for testing, and you will be responsible for the travel costs.
While we are able to offer the intervention free of charge, primarily due to the volunteers who assist us, we are not able to provide transportation or housing. Please visit this website for a list of affordable and convenient accommodations in the city.
The Center for Cerebral Palsy Research is a research facility. We are committed to improving the lives of children with cerebral palsy by contributing to evidence-based clinical and educational practices. Thus, we do not plan on developing a fee-for-service clinic.
TMS stands for Transcranial Magnetic Stimulation. In TMS, a “coil” or wand that is shaped like the number 8 is held up to the scalp. The coil, controlled by the operator, releases single, small bursts of magnetic energy. The small bursts of magnetic energy excite cells in the brain and make them active for a very brief period. Since we will be doing TMS in the part of the brain that controls movement, TMS pulses to that part of the brain typically cause brief muscle twitches.
Many studies have been done to test the safety of TMS. Studies have shown that the energy given in TMS is far too low to cause damage to the brain. Many studies in humans and animals have shown that TMS does not cause damage to the brain or cause any serious side-effects.
In this study, TMS is used to learn how the brain controls muscle movement. When a TMS pulse is given to the part of the brain that controls movement, it sometimes causes a muscle twitch. We will give TMS pulses to different regions of the part of the brain that controls movement, and we will record muscle twitches using stickers that are placed on the surface of the skin. We want to see if hand training results in any changes in how the brain controls hand movements.
Since TMS applies magnetic energy to the brain, it is theoretically possible that TMS might cause a seizure. In a very small number of studies in adults, repetitive TMS (TMS given at a high frequency—more than one pulse per second—continuously for 20 minutes or more) has produced a seizure. However, seizures in adults receiving TMS are extremely rare. In studies like ours that use “single pulse” TMS (at most, only one pulse given in every 10 second period), there have been no reports of seizures in children. In the scientific literature, there are reports of over 1,000 children receiving TMS, and none of them developed a seizure. But as a precaution, individuals with a history of seizures after the age of 2 years old should not receive the TMS.
Although uncommon, it is possible to have headaches, scalp pain, neck aches, tingling in the arm, tiredness, ringing of the ears or fainting. The TMS is done at the Burke-Cornell Medical Research Institute in White Plains by staff with vast experience with TMS. Procedures are put in place that minimize these risks further. Additionally, TMS is not performed on children below 6 years for our studies.
Absolutely! We depend on donations to help us with toys and supplies and to defray our costs of providing the interventions. We hope to develop a large enough endowment in the future to be able to subsidize housing or transportation costs for families who might not otherwise be able to participate. Thank you for your support!