Last year was a difficult year for everyone, not least the healthcare workers that power the advances we are seeking for people with cerebral palsy. The adjustments to medical practices due to COVID-19 left clinical research efforts scrambling to adjust to the “new normal”. As lockdowns occurred, and in-person clinics and elective surgeries were limited, many in our community had to find new, versatile ways to carry out their work.
If we can focus on one silver lining during this unprecedented time, it is how our collaborative network structure not only endured but thrived over the past year. Our investigators, who are predominantly clinicians, stepped up to the challenge, embracing a more virtual world and ensuring The CP Research Network held more meetings and advanced more research in 2020 than any prior year.
Our energy went into three focus areas:
- strengthening our engagement of the community in research through our MyCP platform;
- advancing our research portfolio to improve outcomes;
- and starting to fulfill our strategic objective to translate knowledge by launching educational programming, and publishing and presenting our work.
The MyCP forum continues to foster unique conversations between community members and clinician researchers in the pursuit of evidence-based medicine, best practices, and the prioritization of research. Our latest community prioritization project, Research CP Dystonia Edition (link), concluded with the engagement of more than 160 people from the clinical and patient community. This ensured we could quantify the top research themes for the perplexing condition of dystonia in CP. We will be publishing that data in due course.
We are thankful for the additional time many physicians gave us to revise our CP Registry data collection forms and their patient insights about spasticity, orthoses, devices, and physical therapy. In 2020, the registry grew from approximately 2,000 patients to more than 4,400 patients, ensuring we have a wealth of invaluable information for our research efforts.
We were also proud to add three additional centers to the network, expanding our footprint and adding more passionate clinician researchers to our team. Welcome to Akron Children’s Hospital, Columbia University’s Weinberg Family Cerebral Palsy Center, and the Shirley Ryan Ability Lab. We are grateful for your input and expertise.
Other wins for the year included three studies that received funding, two new studies launched in our Community Registry, and a second large scale clinical study submitted to the National Institutes of Health (NIH).
We also expanded our pursuit of improved outcomes by launching three new improvement initiatives aimed at adult care, dystonia diagnosis, and hip surveillance.
These are in addition to our existing improvement project to reduce infections from intrathecal baclofen pumps.
Improvement science enables rapid test cycles to improve outcomes faster than traditional research methods. These projects build on our clinical CP registry which provides a foundation for measuring the impact of changes in the health outcomes for people with CP.
Efforts to Educate
The MyCP webinar series, a new initiative for 2020, enabled hundreds of community members and clinicians to learn about our studies directly from researchers and engage in meaningful dialogues about the progress, importance, and potential impact.
The 2020 launch of a patient education blog series, featuring guest author Lily Collison, has brought a fresh, new voice to people with spastic diplegia as she shares her take on diagnosis, life, and treatment.
The publication of our Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report also gave the clinical research community detailed insight into our foundational work in CP.
Looking forward to 2021
We have big plans for 2021 as we launch our Genetics of CP study with Dr. Michael Kruer, research that was funded by NIH in 2019. Check out this recent article by Dr. Kruer which highlighted how the discovery of some genes related to CP has informed treatment for more safe and effective outcomes.
As we navigate another exciting year of research and patient resources, we are preparing to announce new partnerships that will strengthen our research capabilities and broaden our relationship with the community.
With five articles under development and more are on the horizon, the future is looking bright for our community.
We hope you have a good year and please stay engaged with us in the CP Research Network.