In July we completed our 25th hand training camp, with more than 150 children participating since 2002. Ten children from as far away as Greece participated. We expanded our projects to include teenagers and children with other forms of CP. Our next camp will be a bimanual training (HABIT) and CIMT day camp for children age 6-17, June 23 - July 12, 2013. PARTICIPATION IS FREE BUT SPACE IS LIMITED! CONTACT US NOW.
We have developed a NEW PROJECT for younger participants age 1.5 to 5 years whereby we train caregivers to provide these hand treatments in their own home. This project takes place throughout the year. Contact us if you would like to be considered for any of these projects.
Marina Brandao, OT, successfully defended her PhD dissertation in May, 2012 at the Federal University, Belo Horizonte, Brazil. She has been intimately involved in our CP camps since 2007. Electra Petra, a former evaluator and camp supervisor, defended her dissertation in 2011. Congratulations to both!.
We continue to collaborate on a project in Belgium involving a sleep-over HABIT camp, with the second camp held this summer. The camp expanded focus to include the lower extremity. Our camp supervisor, Marina Brandao, PhD, also conducted a camp in Belo Horizonte, Brazil in July. We also collaborated a group in Tel Aviv and London on "Magic" theme-based HABIT camps.
Finally, we have begun intensive speech treatments for children with CP. Please contact us if you are interested.
Click here for a link to an article about our summer camps.
In 2011 we published the report of a trial in Neurorehabilitation & Neurorepair comparing CIMT to bimanual training (HABIT). 42 children participated From July 2007 through July 2009. Thank you to all those who participated. We are excited to report that there was no consequence of providing intensive training without the use of physical upper extremity restraints--CIMT and bimanual training (HABIT) resulted in equal improvements in most clinical domains. However, in two other publications it was reported that HABIT may have an advantage in making progress on goals identified as important by children and caregivers (forthcoming), and in improving bimanual coordination determined in our state-of-the-art movement analysis lab.
Dr. Kathleen Friel, who is leading our TMS plasticity project, received the 2012 Gayle Arnold Best Paper Award from the American Academy of Cerebral Palsy and Developmental Medicine. This is the second award to our group, with the first being in 2007 (pictured below) for a paper describing the initial development of HABIT.
Frequently Asked Questions
Why participate in research studies at Columbia?
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 more than 150 children participate in our studies. Our staff consist of physical and occupational therapists, a neuroscientist 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.
What's different about the Columbia program?
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. Thus participating not only may help your child, but may help us improve standard care.
How much does participation cost?
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.
Will my child benefit from the CIMT or HABIT interventions?
Thus far, CIMT and 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.
Which is better, CIT or HABIT?
Both CIMT 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.
Are you against using CIMT?
No. We were the first to test in in children with hemiplegia starting in 1997 and have had more than 100 participate in our constraint program. However, we modified it significantly from the adult (casting) model to make it as child-friendly as possible, We believe CIMT 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.
What if I am against using CIMT
We understand. It is a personal philosophy whether to have your child participate in a CIMT 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 CIMT 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 CIMT in the most child-friendly way possible. Nearly all children enjoy participation. Even if one approach were better, CIMT 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.
Why can't all children participate?
We wish all children could participate! But 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 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 that your child will benefit if he.she qualifies. Currently the ages for recruitment into the study are 1.5 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.
Can my child participate in the study if he/she is under 1.5 years of age?
Currently the ages for recruitment into the study are 1.5 years - 17 years. The intervention camps are fairly intensive and are designed to be child-friendly for children above 4 years. Below that age we have a modified protocol, often in the home environment.
If my child does not qualify, does that mean he/she would not benefit from these types of interventions?
No. It simply means that the way we deliver the services may not be optimal for your child or we won't be able to capture changes based on our measures. Depending on the child, there is still a good chance he/she would benefit if the services are delivered in an alternative manner elsewhere.
Is it expected that any changes in hand function will be permanent?
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 some basic strategies to continue to build on what we achieve.
May my child receive this treatment near home or through his/her own therapist?
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. So we do not provide training to therapists or parents outside the context of our study. But there are many groups who do charge for similar services and we have heard parents were satisfied in many cases. We do have a project involving training of parents to administer HABIT, Contact us if interested.
Is the intervention just intensive physical or occupational therapy?
No. While we have PTs and OTs on staff and there 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.
My child dislikes physical or occupational therapy. Will he/she be bored?
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 150 children have been involved in an intervention 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.
Who are the interventionists working with my child?
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) and 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.
Do children participating in constraint therapy wear full-arm casts?
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 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.
But isn't any restraint invasive and won't this cause my child to be frustrated?
Any restraint has the potential to be invasive. By engaging children in activities we can be certain they will succeed and building confidence and having fun, our participants rarely resist wearing the cotton sling. We monitor this carefully.
My physical or occupational therapist claims constraint-induced movement therapy will "re-wire" my child brain incorrectly to reinforce compensations that inhibit rehabilitation. Is this true?
Surprisingly we get this question 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 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.
Is a sling intensive enough? Wouldn't a cast result in more intensive treatment.
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 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?
For CIT, does my child wear the restraint at home?
The child wears the sling only during the intervention time or safety and to be child-friendly. Instead, 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.
How long is the intervention?
The intervention time for the CIT and HABIT study is 6 hours/day for 15 days = 90 hours.
If my child does not qualify, can we receive this therapy on a fee for service basis?
Unfortunately, we are a research facility, and thus we do not offer these therapies on a fee for service basis.
What is the cost of the intervention?
Again, 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.
If my child has had a stroke, hemispherectomy or traumatic brain injury, can he/she still participate?
For stroke, it depends on the age of occurrence. Presently we are not researching the efficacy of our treatments in children with hemispherectomy or traumatic brain injury. However, if you have a child with these conditions please contact us as we may do so in the future.
May we choose which intervention (CIT or HABIT) we would like our child to participate in?
Unfortunately you may not choose which intervention your child will receive as this would violate our scientific randomization process. But most parents have been happy with the outcome regardless of which intervention.
You have been studying this for more than 10 years. Why?
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.
Is there a long wait list?
There is often a wait list so the earlier you contact us the better. We typically run camps 2-3 times per year, with the greatest demand being for summer camps. So generally the wait is shorter or non-existent in camps outside of summer.
How do you select participants?
Priority is given to people already on the list and 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 the meet certain criteria to match another child. Again, contacting us early is best.
We have participated in the past. May we do it again?
A number of children have participated in our programs more than once. Please contact us if you are interested.
We live in the NYC metropolitan area but cannot arrange transportation because we work. Can transportation be provided for local participants?
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.
Can we participate if we are not from the New York City metropolitan area?
Yes, in fact, we have had participants from as far away as California, Greece and Brazil. However, it would likely require several trips to our laboratory for testing which you would be responsible for the travel costs.
Is housing provided?
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. Teachers College does offer rooms for rent at reduced cost for longer rentals when available. Short-term apartment rentals may be more comfortable and economical. Some participants may qualify to stay in Ronald MacDonald House for a nominal fee. Otherwise, we suggest obtaining a short-term sublet (e.g., NYhabitat.com, Sublet.com or Craigslist.com).
Will you charge for the intervention the future?
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-per-service clinic.
What is TMS?
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. Sine 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.
What is TMS used for?
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.
What are the risks of TMS:
- 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 should not receive the TMS.
Are their any other risks?
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 in at Columbia (New York) Presbyterian Medical Center by staff with vast experience with the procedures. Procedures are put in place that minimize these risks further. The procedure is not performed on children below 7 years for our studies.
Can I donate to your center?
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. You may make a tax-deductible donation by writing a check out to Teachers College, Columbia University, writing "Center for cerebral palsy research under the memo line, and sending it to:
