Pink and white publication of ‘Research CP -- Setting a Patient-Centered Research Agenda for Cerebral Palsy’

How does the CP Research Network support research?

The Cerebral Palsy Research Network has been established to conduct several types of clinical research and quality improvement projects to improve healthcare for people with cerebral palsy. The network is intended to create a collaborative environment for clinical researchers to establish study questions and quality initiatives. The preliminary data provided by the registry will allow researchers in the network to write more robust grant applications to public funders because of the richness of the data and the proven collaboration of the network.

Research questions may range from very specific intervention strategies, e.g., what combination of muscle lengthening, osteotomies, and spasticity reduction techniques (rhizotomy or Baclofen pumps) and physical therapy produce the best results for a given cohort of children.

Cerebral Palsy Registry

What is a registry?

The registry, our primary data collection project, is intended to capture information about demographics, diagnostic information, intervention (medical, surgical and therapeutic) details and some outcome measures. The goal of the registry data project is to support future research including in depth research questions and quality improvement initiatives.

Research questions may range from very specific intervention strategies, e.g., what combination of muscle lengthening, osteotomies, and spasticity reduction techniques (rhizotomy or Baclofen pumps) and physical therapy produce the best results for a given cohort of children.

The CP Research Network support two registries: one clinical and one “patient-powered.” The clinical registry and its uses is describe above. The patient powered registry, called the CPRN Community Registry, is intended to capture patient-reported (or caregiver reported) outcomes from one’s lived experience outside of the clinic. The Community Registry enables cross sectional surveys about life in the community — schooling, access to health care, employment, etc.

Study Questions

Study questions refer to questions for researchers to pursue answers to through to research/studies. These questions will be developed by the participating clinicians and therapists and with co-producers from the community with an interest in clinical research. A scientific committee and patient advisory group will determine the priority of studies to be developed into pilots or written as grant applications.

Quality Initiatives

Quality Improvement processes are well documented and represent a significant benefit that will come from the Cerebral Palsy Research Network. Quality initiatives will come from finding practice variations at different centers revealed by the registry. An example quality initiative is how might the post surgical infection rate be reduced for Baclofen pumps. Quality Improvement methodology demonstrates that by standardizing the protocol, outcomes will improve.

Data Collection Mechanisms

After the standardization of data to be collected in the registry is complete, the data collection mechanisms will be standardized across centers to meet the needs of individual centers Electronic Medical Records (EMR) systems. Many centers use EPIC and we will seek to create a standard set of CPRN flow sheets for EPIC that can be integrated into clinical care. One fundamental principle of CPRN is to collect clinically relevant data once at the point of clinical care by the practitioner interacting with the patient. No paper forms or clinical research assistants will be involved in data collection for the core data project. Funded research studies may seek to collect significantly more data requiring the development of additional data collection paradigms.

Questions about our research

1. How can the CP Research Network’s focus on research help me?

Academic medical centers, those that train physicians while treating patients, have a strong research focus and drive to implement evidence based medicine. Being involved with an academic medical center involve in our research means they are committed to the best practices — not only implementing the current state-of-the-art in treatment but also measure outcomes and continuously improving the care of their CP patient population.
In addition, we believe in the co-production of research which means that no research should happen unless it is important to the patient community and members of the community should be able to participate in the generation of research — not just be subjects in a study.

2. How is the CP Research Network’s approach to research different than more traditional research studies?

The CP Research Network’s research is embedded into clinical practice. We help physicians be more efficient in their documentation and in doing so we enable research. This process is more efficient that other research practices. In addition, our methodology is heavily focused on observational studies using “causal inference” statistical techniques. Observational studies happen in the real world clinical practice unlike randomized control trials that are very limited in their patient population and generalizability of their findings. Observational studies don’t test one intervention versus another but instead use large quantities of information to determine causes.

3. What are outcomes? What does it mean to “improve outcomes”?

Outcomes refer to health improvements. We could improve a treatment, i.e., make it faster, easier, more reliable, but if the recipient of the treatment doesn’t experience an improved outcome, the change in treatment may be for naught. We also differentiate between clinical outcomes and patient reported outcomes. Clinical outcomes may show an improvement in, for example, range motion. But if the patient doesn’t report an improvement in pain, gait, participation, or quality of life, the improvement is less valuable to the patient.

4. Why do we want people with CP, their family members, caregivers and professionals who treat and study CP working together?

The expression “nothing about us without us” was originally coined in central European politics but has become a slogan to emphasize the importance of the involvement of people, especially disabled people, in the decisions and research centered on their health and wellbeing. The concept of patient-centered research is core to the Cerebral Palsy Research Network and our first research effort was to establish a patient-centered research agenda for CP that involved more than 200 members of the community.

5. Why should I participate in a registry?

Because information about you and your lived experience can help rapidly improve healthcare outcomes for people with cerebral palsy. While participation may not benefit you directly, the simple act of providing or allow use of your healthcare data and lived experiences provides rich information to drive the improvement of healthcare for people with cerebral palsy.

6. I feel uneasy about sharing so much personal information. How is my information and privacy protected?

Our registries are de-identified so that no personally identifying information is stored in the registry database. The registries are considered minimal risk because of this fact. All of our registry data is stored on protected, HIPAA compliant computer servers at the University of Pittsburgh.

7. Does CP research matter?

Funding cerebral palsy research is critical to improving the quality of life of individuals who have CP. Cerebral Palsy research funding and attention has lagged far behind other conditions and CPRN seeks to close this gap by expediting the collection analysis of information and experiences of people with cerebral palsy.