Our Impact Grows: Sharing Our Findings
Providers, families and researchers for children with cerebral palsy (CP) will meet in Chicago, Illinois on September 10-13th for the American Academy for Cerebral Palsy and Developmental Medicine’s (AACPDM) annual meeting. This in-person meeting will bring together participants from around the world. The CP Research Network will demonstrate is growing impact on the field of CP care and research by sharing its findings in two mini-symposia, one morning session, four free paper presentations and three scientific posters. All these efforts are aimed at improving outcomes for people with CP through the implementation of evidence-based information and practices. We are thrilled to have the opportunity to share the results of our research, and to provide information about how the CP Research Network can be a catalyst for CP research.
The mini symposia will be two hours in total length including discussion.
- Common Data Models and Research Data Sources: The practical realities of leveraging rich data sets to accelerate discovery – A multi-disciplinary team of presenters will be led by the CP Research Network CEO Paul Gross and include Michael Kruer, MD. They will discuss the sources of data available to researchers, the mechanism to access them and the practical realities of comparing and linking the data to generate new knowledge. The symposium will include speakers with real-world experience leveraging and linking these types of disparate but related data sources. It is appropriate for researchers focused on clinical and translational research.
- Understanding the rationale behind practice variation in selective dorsal rhizotomy (SDR) moderated by Paul Gross, includes presenters from the disciplines that participate in SDR decision making including several CP Research Network investigators including Bhooma Aravamuthan, MD, DPhil, Jeffrey Leonard, MD, Tom Novacheck, MD, Joyce Oleszek, MD, and Brandon Rocque, MD, MS. The panel will discuss varied approaches to surgical decision making for SDR including overviews of national and international practice variation. They will discuss criteria involved in surgical spasticity decision making for SDR across several large tertiary care centers.
The morning seminar presentation is:
- Accessing the CP Research Network Registries for Community Research and Secondary Analyses featuring speakers Kristie Bjornson, PT, PhD, Mary Gannotti, PT, PhD, Paul Gross and Brandon Rocque, MD, MS. These speakers will discuss how researchers can access the data generated by the CP Research Network registries to perform secondary analyses that generate new knowledge about CP from existing data collection. The speakers will cover the process for applying to access data and the types and quantity of data available in both the clinical and community registries.
Free papers and scientific posters feature a single investigator presenting findings based on research generated from our network. Free papers are eight minute oral presentations given to attendees and posters are displayed a specific times during the conference in which investigators are available to explain their research findings one on one with interested attendees. In this format, topics and investigators include:
- Botulinum toxin practice variation in North America by Sruthi Thomas, MD, PhD
- Consequences of Falls by Elizabeth Boyer, PhD
- Multi-center improvement in dystonia detection in people with CP by Bhooma Aravamuthan, MD, DPhil
- SDR practice variation analysis by Brandon Rocque, MD, MS
- Adult Cerebral Palsy Patient-Reported Outcomes from a Community Registry: Follow-Up Report on the Impact of Gross Motor Function and Age on Functional Decline by Cristina Sarmiento, MD
- Adult Cerebral Palsy Patient-Reported Outcomes from a Community Registry: Follow-Up Report on the Chronic Pain Findings, Cristina Sarmiento, MD
- CP Sensory study by Bhooma Aravamuthan, MD, DPhil
These symposia, morning seminars, scientific posters and free papers all focus on improving care and advance research on the international stage. The broad reach the network’s work is clearly visible at this annual meeting and will attract new clinician researchers into our circle, with potential to widen our eventually impact.