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Archive for CPRN Studies

Cerebral Palsy Diagnoses Webinar

Posted on November 12, 2020
by Paul Gross
No Comments
Dr. Bhooma Aravamuthan

Dr. Aravamuthan, Pediatric Neurologist

The Cerebral Palsy Research Network (CPRN) announced that its next webinar in its MyCP Webinar series would be on family attitudes toward a cerebral palsy diagnoses on Wednesday, November 18 at 8 pm ET. Bhooma Aravamuthan, MD, DPhil, a pediatric movement disorders neurologist from St. Louis Children’s Hospital, will share her objectives and preliminary data for this research. The presentation will be approximately 20 minutes and followed by an open Q&A. Dr. Aravamuthan is a leader in numerous initiatives for cerebral palsy (CP) in CPRN and the field with her recent appointment to the American Academy of Neurology Child Neurology Quality Measures Standing Workgroup. In conjunction with this study, Dr. Aravamuthan has been surveying clinicians who diagnose cerebral palsy in an effort to change the field’s understanding of CP with the advent of more genetic discoveries in conjunction with CP. In this webinar, she will talk about her recent study of clinicians and how she hopes to marry that with the feedback from families and individuals with CP to improve diagnoses and clinician / patient dialogue in support of families.

Interested participants need to register for the webinar to be sent instructions for joining. Webinars will be recorded and posted for later viewing. The MyCP Webinar series includes one presentation per month on different aspects of CPRN’s research studies. Please join us!

CPRN Studies, Education

Webinar: Surgical Spasticity Treatments for Children who are not Ambulatory

Posted on October 21, 2020
by Paul Gross
No Comments

Sruthi Thomas, MD, PhD, Pediatric Physical Rehabilitation and Medicine

The Cerebral Palsy Research Network (CPRN) announced that its next webinar in its MyCP Webinar series would be on surgical spasticity treatments for children who are not ambulatory on Monday, October 26 at 8 pm ET. Sruthi Thomas, MD, PhD, a pediatric physical medicine and rehabilitation physician from Texas Children’s Hospital, will share her formative work in this topic identified by Research CP. The presentation will be approximately 20 minutes and followed by an open Q&A. Dr. Thomas has initiated a number of lines of study on spasticity management for cerebral palsy (CP) to build preliminary data in support of a large multi-center comparative effectiveness research (CER) grant application. Spasticity interventions have been studied more in children with CP who are ambulatory so a CER study that helps determine which interventions work best in children who are not ambulatory is needed. Parents are increasingly faced with very difficult choices between surgical spasticity interventions to address pain, care and other activities for these children.  In this webinar, Dr. Thomas will talk about the state of the evidence, the importance of research and the studies she is planning to answer critical questions for this population.

Interested participants need to register for the webinar to be sent instructions for joining. Webinars will be recorded and posted for later viewing. The MyCP Webinar series includes one presentation per month on different aspects of CPRN’s research studies. Please join us!

CPRN News, CPRN Studies, New CP studies, Research CP

CPRN Investigator Funded for Feasibility Study

Posted on October 8, 2020
by Paul Gross
2 Comments

Dr. Ed Hurvitz, Chair of Physical Medicine & Rehabilitation, University of Michigan

Dr. Ed Hurvitz, Chair of Physical Medicine & Rehabilitation, University of Michigan

Edward A. Hurvitz MD of Michigan Medicine, University of Michigan and Cerebral Palsy Research Network (CPRN) Executive Committee, was awarded the Foundation for Physical Medicine & Rehabilitation Gabriella Molnar grant for a project entitled “Feasibility of Adding Grip Strength Measures to Body Composition Assessments in Individuals with Cerebral Palsy.”  The aim of the project is to test the feasibility of adding measures such as waist-hip circumference, skinfold measures, and grip strength to a regular clinic appointment for individuals with cerebral palsy (CP) from age 8 through adulthood, and then potentially as data points in the CPRN CP Registry.  The Michigan Adults with Pediatric Onset Disabilities research group has published extensively on chronic disease risk in adults with CP.  Body composition and grip strength are well documented indicators for risk of morbidity and mortality in typical developing populations, and obesity has been associated with risk of multi-morbidity in adults with CP, including young adults between ages 18-40.  The study will also include a history of chronic disease with an exploratory aim to correlate body composition and hand grip findings to history.

CPRN congratulates Dr. Hurvitz and his colleagues for their success in funding this research which was originally approved as a concept for CPRN in April 2019. This study addresses top priorities from Research CP, including the study of the effects of aging with cerebral palsy as well as laying the groundwork to do studies of exercise strategies to promote better health outcomes.  Co-investigators on the study include Drs. Mark Peterson, Dan Whitney, Heidi Haapala, Mary Schmidt, Angeline Bowman and Jessica Pruente. The funding amount is $10,000 dollars, to be used for measurement equipment and research assistance.  The start date is December 1, and the study is planned for 18 months.

CPRN News, CPRN Studies, Research CP

MyCP Webinar: Speech and Language Predictors of Participation in Children with Cerebral Palsy

Posted on September 26, 2020
by Paul Gross
4 Comments

Kristen Allison, PhD, CCC-SLP

Kristen Allison, PhD, CCC-SLP, is the principal investigator for CPRN’s Speech and Language Predictors of Participation for Children with Cerebral Palsy in the Community Registry at MyCP.

The Cerebral Palsy Research Network (CPRN) announced that its next webinar in it MyCP Webinar series would be on the role of speech and language as predictors of participation for children with cerebral palsy (CP) on Tuesday, September 29, at 8 pm ET. Kristen Allison, PhD, CCC-SLP, an assistant professor at Northeastern University, will discuss her research on this topic. Dr. Allison’s research was funded by the Research CP award sponsored by CP NOW in the fall of 2019. The presentation will be approximately 20 minutes and followed by an open Q&A with Dr. Allison. The study, which includes children of all abilities with CP between the ages of four and 17 years-old, seeks to understand how language skills impact a child’s ability to participate in various activities. Participation is a critical factor in quality of life and is an increasingly important patient reported outcome measure for many research efforts. Dr. Allison’s study was made available to participants in the CPRN Community Registry on MyCP in the spring of 2020.

Interested participants need to register for the webinar to be sent instructions for joining. Webinars will be recorded and posted for later viewing. The MyCP Webinar series includes one presentation per month on different aspects of CPRN’s research studies. Please join us!

CPRN Studies, Research CP

How CPRN built its Cerebral Palsy Registry

Posted on September 10, 2020
by Paul Gross
No Comments

CPRN Registry Publication

CPRN Registry Publication

The Cerebral Palsy Research Network (CPRN) announced that its third publication entitled “Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report” was published in Archives of Rehabilitation Research and Clinical Translation this past week.  The publication is “open access” meaning that anyone from the cerebral palsy (CP) community can read the article free of charge.  The article, authored by the founding members of the CPRN Executive Committee, describes the creation of the CPRN Registry from a process perspective – who was involved, what were the objectives and how and why were the data elements chosen for inclusion in the registry.

In addition to defining the process, the article also provides a baseline registry report for the first few years of data collection.  This preliminary report provides a descriptive analysis of the first 1858 patients – demographics, movement disorder, gross motor capabilities, and other clinical characteristics — included in the registry from eight sites.  Since this articled was drafted, the registry has grown to more than four thousand patients from 10 sites.  The registry is expected to continue to grow in step functions as more sites come online with their clinical practice supporting the registry.

The article also discusses how the CPRN registry uniquely leverages hospital electronic medical records (EMR) systems to include large volumes of data without burdening clinicians.  The CPRN registry database has been built into Epic – one of the leading EMR systems.  Development is underway for Cerner – another leading EMR system. The discussion section of the article also compares the focus of the CPRN Registry to the Common Data Elements for CP as defined by the National Institute of Neurological Disorders and Stroke in conjunction with the American Academy for Cerebral Palsy and Developmental Medicine.

CPRN’s other publications can be found on our publications page.

CPRN News, CPRN Studies

MyCP Webinar: Can we make patient reported outcome measures useful to patients and parents?

Posted on August 13, 2020
by Paul Gross
2 Comments

Dr. Unni Narayanan

Dr. Unni Narayanan is a pediatric orthopedic surgeon at SickKids

The Cerebral Palsy Research Network (CPRN) announced that its next webinar in its MyCP Webinar Series will feature Unni Narayanan, MD, MSc who is a pediatric orthopedic surgeon at SickKids in Toronto, Canada on Monday, August 17, at 8 pm ET. The topic is “Can we make patient reported outcome measures useful to patients and parents?” Dr. Narayanan has developed several patient-reported outcome (PRO) measures to assess the effectiveness of surgical interventions in cerebral palsy (CP). Now his research is seeking to determine if those PROs can be used to facilitate a shared decision making between patients/caregivers and clinicians. Shared decision making is a process by which clinicians and patients or caregivers collaborate to understand the evidence base behind interventions and the tradeoffs between interventions or alternatives to surgeries and medications. Shared decision making is very important in CP because most surgeries are elective. Dr. Narayanan will present his recently funded research project being done in conjunction with CPRN and then take questions from attendees. The presentation will be approximately 20 minutes followed by an open ended Q&A.

Parents, caregivers and adults with CP can access the PROs developed by Dr. Narayanan by joining MyCP.org where they can be found in the CPRN Community Registry. After completing one of these measures, you can print out the results to share them with your CP physician and facilitate the shared decision making process now!

Interested participants need to register for the webinar to be sent instructions for joining.  Webinars will be recorded and posted for later viewing.  The MyCP Webinar series includes one presentation per month on different aspects of CPRN’s research studies.  Please join us!

CPRN News, CPRN Studies

CPRN Adds Speech Study

Posted on July 1, 2020
by Paul Gross
No Comments

Kristen Allison, PhD, CCC-SLP

Kristen Allison, PhD, CCC-SLP, is the principal investigator for CPRN’s Speech and Language Predictors of Participation for Children with Cerebral Palsy in the Community Registry at MyCP.

The Cerebral Palsy Research Network (CPRN) added a new study to its Community Registry hosted on MyCP. The study is entitled “Speech and Language Predictors of Participation for Children with Cerebral Palsy.” The study is intended for parents or caregivers of children ages four (4)-17 years old. The study was developed by Dr. Kristen Allison, an assistant professor in the Department of Communication Sciences and Disorders and the director of the Speech Motor Impairment & Learning (SMILe) Lab at Northeastern University in Boston, MA.

The study consists of three sequential surveys on MyCP and takes approximately 30-45 minutes to complete. The study seeks to enroll 120 participants each of whom will be compensated with an Amazon gift card for $20 for their time and effort. Knowledge gained from the study will be very important for understanding the effect of speech on participation for children with CP which is critical to their quality of life. If you haven’t already signed up to participate in studies on MyCP, you can go to the survey page to read the consent and then proceed to participate in the study or sign up for MyCP if you haven’t joined yet.

CPRN News, CPRN Studies, New CP studies

Sign Up for Upcoming Webinars

Posted on June 30, 2020
by Paul Gross
No Comments

Book: Spastic Diplegia -- Bilateral Cerebral Palsy

Book: Spastic Diplegia — Bilateral Cerebral Palsy

Lily Collison, Author

Lily Collison, Author, Spastic Diplegia — Bilateral Cerebral Palsy

On Wednesday, July 8 at 8 pm ET, we are excited to interview author Lily Collison who is the mother of a young adult with spastic diplegia. Ms. Collison was inspired to write a book, a manual of sorts, for parents of children with spastic diplegia bilateral cerebral palsy to share the many learnings she has had on her journey with her son and his CP. He recently underwent a selective dorsal rhizotomy for the treatment of his CP.

Dr. Michael Kruer

Dr. Michael Kruer will speak on genetics and cerebral palsy.

And then MyCP webinar series continues with episode #5 as Dr. Michael Kruer describes his work in genetics and cerebral palsy (CP) entitled “Genetics and cerebral palsy — what difference does it make?” Dr. Kruer is a leading researcher in CP genetics and was recently awarded a three million dollar grant to study genetic factors in CP in partnership with the Cerebral Palsy Research Network. He is also the chairman of the International Cerebral Palsy Genomics Consortium. His presentation on Thursday, July 23 at 8 pm ET (NOTE: we moved this event from July 9) will describe the importance of understanding the genetics underlying CP and how his research will unlock important new findings about causes, treatments and outcomes.

Both webinars will last approximately 50 minutes and be split equally between presentation/interview and open Q&A with attendees. If you haven’t signed up for the MyCP webinar series, sign up to receive webinar invite information via email. Both webinars will be recorded and available for future viewing.

CPRN News, CPRN Studies

MyCP Webinar Series: Treating Spasticity

Posted on May 30, 2020
by Editor MyCP
No Comments

Paul Gross, Chairman and Founder of CPRN

Paul Gross, Chairman and Founder of CPRN

The MyCP webinar series continues this week with a presentation on variations treating spasticity in cerebral palsy (CP). The chairman and founder of the Cerebral Palsy Research Network (CPRN) and Associate Professor at the University of Utah, Paul Gross, will present his findings in a webinar entitled “Practice Variation is Spastic Cerebral Palsy” on Tuesday, June 2, at 8 pm ET via Zoom. The presentation will focus on the surgical treatments for spasticity and how different hospitals approach surgical treatments such as selective dorsal rhizotomy and intrathecal baclofen pumps. Approximately 80% of the people with CP have a diagnosis of spasticity as their movement disorder / tone type. Gross interviewed more that 40 physicians across North American that treat children with spastic cerebral palsy. This qualitative data from these interviews will be combined with quantitative data from the CPRN CP Registry to provide a broad picture of the surgical treatments for spasticity. While the interviews were focused on surgical treatments for children that are ambulatory, the CPRN CP Registry includes information about children that are not ambulatory which will be included in the presentation.

The presentation will be approximately 20 minutes and followed by an open Q&A with Mr. Gross. People interested in attending or accessing the recording afterward may sign up on CPRN. The webinar is open to the entire CP community including people with CP, caregivers and clinicians but the information will be suited for the non clinicians.

CPRN News, CPRN Studies, New CP studies

Webinar #3: Cerebral Palsy and Epilepsy

Posted on April 30, 2020
by Paul Gross
No Comments

Dr. Adam Ostendorf

Dr. Adam Ostendorf, Pediatric Neurologist

Join us to learn about our initial findings about cerebral palsy (CP) and epilepsy next Tuesday, May 5 at 8 pm ET. Dr. Adam Ostendorf, a pediatric neurologist from Nationwide Children’s Hospital and the lead investigator for our epilepsy study group, will share a report from our first 18 months of data collection about epilepsy in the CP population. Dr. Ostendorf received a grant from the Pediatric Epilepsy Research Foundation to expand CPRN’s CP registry data collection to include specific questions about epilepsy that shed new light on treatments and needed research.

The CPRN CP Registry gathers data from annual CP clinic visits and interventions at hospitals across the United States. Epilepsy is the most common co-occuring condition in CP and creates further complexity for how to treat the two conditions together. Dr. Ostendorf will give a 20-minute presentation about these findings and the implications for research and then answer questions in an open Q&A. If you haven’t registered for the MyCP webinar series, you can sign up on CPRN.

CPRN Studies
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Contact Us

Paul Gross, Chairman
Cerebral Palsy Research Network
University of Utah
Williams Building
295 Chipeta Way, Room: 1N455
Salt Lake City, UT 84108

Phone: 402 302-CPRN (2776)
Email: paul@cprn.org

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