Pediatric Spine Research
Jennifer Schottler, MPT discusses highlights from two studies; Pediatric Spine Registry and A Multicenter Study to Evaluate the Pharmacokinetics and Safety of EXPAREL for Postsurgical Analgesia in Pediatric Subjects that focused on the pediatric spine.
Featuring:
Jennifer Schottler, MPT
Learn more about Jennifer Schottler, MPT Transcription:
Melanie Cole (Host): Welcome. Today, we’re talking about the latest research in the arena of pediatric spine disorders. My guest is Jennifer Schottler. She’s a Physical Therapist and a Clinical Research Coordinator at Shriners Hospital for Children in Chicago. Jennifer, I’m so glad to have you with us. What an interesting topic this is. Please, first, set the stage, give us a brief overview of scoliosis and what that is.
Jennifer Schottler MPT (Guest): So, we see many, many children here at Shriners with scoliosis. Idiopathic scoliosis is scoliosis that is without a known cause. So, we don’t know where it necessarily comes from or why it starts. Within idiopathic scoliosis, we have three different types. So, infantile scoliosis is diagnosed in children that present between zero to three years of age with their spine deformity. And then juvenile scoliosis are those children who present between the ages of four and ten and then we have adolescent scoliosis who present with their deformity at ten years of age or greater.
So, scoliosis is diagnosed in approximately three million new cases each year and in about two percent of the pediatric population. In addition to idiopathic scoliosis, there are other types of scoliosis as well. So, neuromuscular scoliosis develops in children who have an associated condition that affects their muscles or their nervous system. For example, children with cerebral palsy or spina bifida or muscular dystrophy for example develop scoliosis over time and in that case, it is considered neuromuscular scoliosis.
Additionally, there is syndrome X scoliosis which develops in children who have an associated syndrome. So, examples of this may present in children with Down’s Syndrome, and children with osteogenesis imperfecta or arthrogryposis as another example. And then finally, congenital scoliosis. Congenital scoliosis is kind of in its own category because the age of onset tends to be prenatal. So, in congenital scoliosis; one or more bones in the spine is either malformed or missing.
Host: Well that was quite an explanation Jennifer. Thank you so much. So, tell us a little bit about the Pediatric Spine Registry formerly the Children’s’ Spine Registry. Tell us a little bit about it, how the data is collected on children with spine and chest wall disorders for use in future studies so that we can learn more about these disorders and help the children as a result.
Jennifer: So, what happens is, there’s such a large number and type of spine and chest wall deformities that often a single institution would not have a large enough population to perform a research study on that group of children. So, what the Pediatric Spine Registry does, it’s operated by the Children’s Spine Foundation and it’s a registry database study and data is collected on all eligible participants for use in future studies.
So, for example, the registry allows the multiple centers; there is approximately 60 centers worldwide that participate in this registry and it allows the centers to compile their data from all of their patients and then in turn create research questions that can be posed to the registry. If the physicians involved are using the registry, the numbers are therefore going to be much larger and they’ll have the population that they need in order to answer their research questions.
Host: Wow, isn’t that a fascinating field of study. So, as the large number of varying disorders that you’ve discussed, the types of scoliosis that single institutions don’t have that large enough patient population to provide this research; how is the data shared? Some people may have questions, parents specifically about how this data is collected and used in the registry and privacy practices for their children that might get involved in the registry or in these studies?
Jennifer: This is obviously completely voluntary. So, patients are screened when they come to us during their regular standard of care visits. And if they are interested in having their child participate in the registry; then they sign an informed consent form. Because the information will be used for research, we don’t necessarily know in their child’s case which research study they may be in. But they sign an informed consent allowing their child’s information to be collected and shared.
So, following the visits, the coordinator enters the data from their doctor’s appointment and or x-rays that were done and the data collection procedure is then repeated for every clinic visit and or surgery that the child has. So, all of the information that goes into the registry is de-identified. So we don’t share patient names, patient addresses, phone numbers; nothing that could identify the child. The child is given sort of like a unique code and is put in the registry by a code. If their information is used for any publications or presentations; there is nothing that would identify their child within the registry.
Host: So, tell us about the 500 kids from Shriners Hospitals for Children in Chicago and the registry. What’s it like for them to be involved? I would think that kids kind of find it cool to be involved. What’s it like for them?
Jennifer: Well to be honest, they don’t do anything different to participate in the registry than they do for their standard of care visits. We definitely always try to make sure that the child is involved in the process. And you’re right, they are often super excited that their information is going to be shared. Sometimes these kids feel like they are the only ones that have this rare kind of chest or spine wall deformity and in reality, we are able to tell them listen, we’re going to put you in a registry where there are hundreds of other kids just like you. And that usually makes them very excited. And I will say, that one of the things that we try to tell patients and families is putting them in the registry, it doesn’t change anything we are going to do for them currently. We are doing what is the best treatment for them at this time. But it could help children like them in the future. And I will say that most families are happy to jump on and be involved in something that can help other children like them in the future.
Host: Absolutely. Great information. Wrap it up for us. What would you like listeners to take away from this segment about Pediatric Spine Registry and scoliosis and the latest advances in pediatric spine research, which is so exciting and so important.
Jennifer: Well, yeah there are so many research studies going on that are coming out of this Pediatric Spine Registry which is so exciting. So, the doctors that are part of this registry, what they can do is pose a question and say heh, I want to look at all children for example, that have Marfan’s Syndrome with associated scoliosis and I would like to see how they do with surgery, if they get surgery or how they do if they end up not getting surgery; we’d like to know the outcomes of those kids as well and then perform studies with this. So, I will say that some of the most cutting edge research will be coming out of this group of patients in the Pediatric Spine Registry.
In the registry there are over 8000 kids that are a part of it. And we have about 500 of our kids here in Chicago enrolled in it. So, it’s really exciting. It’s really exciting for our physicians here to be a part of and to know that the most cutting edge research will be coming out of this big registry group that we are able to share and collaborate with physicians around the country.
Host: That’s so cool. Thank you so much Jennifer for coming on with us today and telling us about the registry. And that wraps up another episode of Pediatric Specialty Care Spotlight with Shriners Hospitals for Children in Chicago. Head on over to our website at www.shrinerschicago.org for more information and to get connected with one of our providers. If you found this podcast as interesting as I did, please share with your friends and family so that we can all learn from the experts at Shriners Chicago together and be sure not to miss all the other fascinating podcasts in our library. Until next time, I’m Melanie Cole.
Melanie Cole (Host): Welcome. Today, we’re talking about the latest research in the arena of pediatric spine disorders. My guest is Jennifer Schottler. She’s a Physical Therapist and a Clinical Research Coordinator at Shriners Hospital for Children in Chicago. Jennifer, I’m so glad to have you with us. What an interesting topic this is. Please, first, set the stage, give us a brief overview of scoliosis and what that is.
Jennifer Schottler MPT (Guest): So, we see many, many children here at Shriners with scoliosis. Idiopathic scoliosis is scoliosis that is without a known cause. So, we don’t know where it necessarily comes from or why it starts. Within idiopathic scoliosis, we have three different types. So, infantile scoliosis is diagnosed in children that present between zero to three years of age with their spine deformity. And then juvenile scoliosis are those children who present between the ages of four and ten and then we have adolescent scoliosis who present with their deformity at ten years of age or greater.
So, scoliosis is diagnosed in approximately three million new cases each year and in about two percent of the pediatric population. In addition to idiopathic scoliosis, there are other types of scoliosis as well. So, neuromuscular scoliosis develops in children who have an associated condition that affects their muscles or their nervous system. For example, children with cerebral palsy or spina bifida or muscular dystrophy for example develop scoliosis over time and in that case, it is considered neuromuscular scoliosis.
Additionally, there is syndrome X scoliosis which develops in children who have an associated syndrome. So, examples of this may present in children with Down’s Syndrome, and children with osteogenesis imperfecta or arthrogryposis as another example. And then finally, congenital scoliosis. Congenital scoliosis is kind of in its own category because the age of onset tends to be prenatal. So, in congenital scoliosis; one or more bones in the spine is either malformed or missing.
Host: Well that was quite an explanation Jennifer. Thank you so much. So, tell us a little bit about the Pediatric Spine Registry formerly the Children’s’ Spine Registry. Tell us a little bit about it, how the data is collected on children with spine and chest wall disorders for use in future studies so that we can learn more about these disorders and help the children as a result.
Jennifer: So, what happens is, there’s such a large number and type of spine and chest wall deformities that often a single institution would not have a large enough population to perform a research study on that group of children. So, what the Pediatric Spine Registry does, it’s operated by the Children’s Spine Foundation and it’s a registry database study and data is collected on all eligible participants for use in future studies.
So, for example, the registry allows the multiple centers; there is approximately 60 centers worldwide that participate in this registry and it allows the centers to compile their data from all of their patients and then in turn create research questions that can be posed to the registry. If the physicians involved are using the registry, the numbers are therefore going to be much larger and they’ll have the population that they need in order to answer their research questions.
Host: Wow, isn’t that a fascinating field of study. So, as the large number of varying disorders that you’ve discussed, the types of scoliosis that single institutions don’t have that large enough patient population to provide this research; how is the data shared? Some people may have questions, parents specifically about how this data is collected and used in the registry and privacy practices for their children that might get involved in the registry or in these studies?
Jennifer: This is obviously completely voluntary. So, patients are screened when they come to us during their regular standard of care visits. And if they are interested in having their child participate in the registry; then they sign an informed consent form. Because the information will be used for research, we don’t necessarily know in their child’s case which research study they may be in. But they sign an informed consent allowing their child’s information to be collected and shared.
So, following the visits, the coordinator enters the data from their doctor’s appointment and or x-rays that were done and the data collection procedure is then repeated for every clinic visit and or surgery that the child has. So, all of the information that goes into the registry is de-identified. So we don’t share patient names, patient addresses, phone numbers; nothing that could identify the child. The child is given sort of like a unique code and is put in the registry by a code. If their information is used for any publications or presentations; there is nothing that would identify their child within the registry.
Host: So, tell us about the 500 kids from Shriners Hospitals for Children in Chicago and the registry. What’s it like for them to be involved? I would think that kids kind of find it cool to be involved. What’s it like for them?
Jennifer: Well to be honest, they don’t do anything different to participate in the registry than they do for their standard of care visits. We definitely always try to make sure that the child is involved in the process. And you’re right, they are often super excited that their information is going to be shared. Sometimes these kids feel like they are the only ones that have this rare kind of chest or spine wall deformity and in reality, we are able to tell them listen, we’re going to put you in a registry where there are hundreds of other kids just like you. And that usually makes them very excited. And I will say, that one of the things that we try to tell patients and families is putting them in the registry, it doesn’t change anything we are going to do for them currently. We are doing what is the best treatment for them at this time. But it could help children like them in the future. And I will say that most families are happy to jump on and be involved in something that can help other children like them in the future.
Host: Absolutely. Great information. Wrap it up for us. What would you like listeners to take away from this segment about Pediatric Spine Registry and scoliosis and the latest advances in pediatric spine research, which is so exciting and so important.
Jennifer: Well, yeah there are so many research studies going on that are coming out of this Pediatric Spine Registry which is so exciting. So, the doctors that are part of this registry, what they can do is pose a question and say heh, I want to look at all children for example, that have Marfan’s Syndrome with associated scoliosis and I would like to see how they do with surgery, if they get surgery or how they do if they end up not getting surgery; we’d like to know the outcomes of those kids as well and then perform studies with this. So, I will say that some of the most cutting edge research will be coming out of this group of patients in the Pediatric Spine Registry.
In the registry there are over 8000 kids that are a part of it. And we have about 500 of our kids here in Chicago enrolled in it. So, it’s really exciting. It’s really exciting for our physicians here to be a part of and to know that the most cutting edge research will be coming out of this big registry group that we are able to share and collaborate with physicians around the country.
Host: That’s so cool. Thank you so much Jennifer for coming on with us today and telling us about the registry. And that wraps up another episode of Pediatric Specialty Care Spotlight with Shriners Hospitals for Children in Chicago. Head on over to our website at www.shrinerschicago.org for more information and to get connected with one of our providers. If you found this podcast as interesting as I did, please share with your friends and family so that we can all learn from the experts at Shriners Chicago together and be sure not to miss all the other fascinating podcasts in our library. Until next time, I’m Melanie Cole.