NIH Forum features CPRN’s Registry

The Cerebral Palsy Research Network (CPRN) chairman and founder, Paul Gross, moderated a panel of experts entitled “Big Data: How to Address Custom Needs” this past week at the National Institutes of Health (NIH).  The National Institute of Neurological Disorders and Stroke (NINDS), the largest funder of science of the brain and nervous system, held its annual Nonprofit Forum entitled “Progress through Partnership.”  The forum gathers leaders from patient advocacy organizations together with the directors of NINDS to increase understanding of the institute and enhance collaboration between NINDS staff and these nonprofits.

“Paul Gross has been an integral part of the success of the NINDS Nonprofit Forum for the past several years” said Nina Schor, MD, PhD, acting Director of NINDS.  “This year he took on the leadership role on a panel on Big Data featuring several distinguished speakers. He also led two successful breakout sessions for the more than 50 patient groups who were attending.”

The panel presented examples of the use of big data in a number of conditions including Alzheimer’s, cerebral palsy, Friedrich’s ataxia, hydrocephalus, Parkinson’s disease and ultra-rare diseases.  Panelists then gathered with attendees a breakout session to further brainstorm big data applications for attendees’ custom needs.  CPRN’s use of data gathered from electronic medical records systems and planned integration with genomic analyses provided attendees with a unique solution for making new discoveries. The breakout session delved into a vigorous discussion of patient registries of which many different approaches were represented in the room.  Ultimately, the NINDS Nonprofit Forum delivered on its promise of its title of progress through partnership.

Working with NIH is important for CPRN because it strengthens CPRN’s position for future grants because of our demonstrated innovation with our registry.

Watch the New Webinar on How to Partner with CPRN

The Cerebral Palsy Research Network (CPRN) released a new webinar entitled “How to partner with CPRN to conduct multi-center research” today. The original webinar was conducted in January 2019 by CPRN Chairman Paul Gross, CPRN Data Coordinating Center Principal Investigator Jacob Kean, PhD, and CPRN Principal Investigator Michael Kruer, MD.  The webinar was developed to educate researchers on the capabilities of CPRN to conduct multi-center research and how a researcher can partner with CPRN to leverage its capabilities.  The benefits to the researchers include: 

  1. Strengthen grant applications with CPRN preliminary data
  2. Accelerate research through established network sites
  3. Leverage integrated patient advisors.

“We are very excited to see how our open science approach has ignited new collaborations in research for cerebral palsy,” said CPRN Chairman Paul Gross.  “We expect five or more centers to join CPRN before the year’s end which would bring the total to 29 centers. This webinar and an upcoming Request for Applications opens the door for new types of research partnerships.”

The webinar’s release, here and on YouTube, is very timely as CPRN prepares its first Request for Applications in partnership with CPNOW, a foundation focused on community education and research funding and our community engagement partner.  The webinar describes the different types of studies that can be conducted with CPRN and the data management and analysis resources that it provides for investigators. 

Originally delivered as an instructional course at the American Academy for Cerebral Palsy and Development Medicine in the Fall of 2018, the webinar format makes the content accessible to everyone.  In the webinar, Dr. Kruer details how he partnered with CPRN to go to secure a multi-million-dollar grant from NIH for his CP genetics study.  We hope you watch and we welcome your feedback on how to make partnering with CPRN accessible and clear.

Lillian Working with her Personal Trainer

Motivating your child with CP

Motivating your child with CP

Recently a grandparent of an 8-year old boy with CP asked me for ideas about how to help motivate her grandson. She said he is a happy child, but she is concerned that he is becoming a master at getting people to do things for him rather than working on developing skills himself. She believes he has learned to “work the system,” by taking advantage of people who “just want to make him happy”, but who do not necessarily encourage him to work to attain the skills within his reach. She wondered if I have any tips to encourage him take more responsibility for himself.

Her concerns echo those of many caregivers and are something we have experienced with our daughter Maya. In fact, assessing and addressing issues related to motivation is a common issue for children with disabilities. Parents of very young children may feel particularly confused because they are unsure of their child’s potential. Finding a balance between providing the right amount of support to encourage the child to attain new skills without pushing the child so far that he becomes frustrated, is confusing and often fraught with emotion.

Some parents feel guilty allowing their child to struggle because they understandably believe that having a disability is enough of a struggle for their child. However, offering help when help may not be needed can lead to longer term problems where the child becomes discouraged from setting and meeting his own goals. The flip side of this is if a child is too frustrated and does not experience feeling successful, he may lose his motivation to try.

With these issues in mind, here are some of my ideas about motivation that may be helpful in establishing a pattern of healthy goal setting and attainment:

OWNERSHIP

Ownership is the key to being engaged in an activity. For the child, ownership means choosing an activity and caring about it. Even a non-verbal or pre-verbal child can often select between several options. Choice is the main ingredient to ownership. If a child isn’t interested in what they are doing, they aren’t likely to keep trying.

When I see that Maya is not engaged in an activity or hear her complain about being bored, I try to present her with alternative choices that address similar learning needs and that she also enjoys. When I started actively using this approach I could often hear Maya breathe a sigh of relief and she expressed gratitude for having the chance to make a different choice. Some activities do not have room for making changes, like standing, and in those cases I offer to pair the activity with something she enjoys like listening to music or playing cards.

Motivating your child with CP- 2

MIX IT UP

Children with CP typically get so much therapy (OT, PT, speech, etc.) that the therapy itself can get stale, frustrating and eventually unproductive. Having a wide range of possibilities to vary over time can be helpful.

For Maya, we have moved toward offering her a range of activity-based approacheswith therapy intensives offered periodically. This allows her to remain encouraged and motivated to invest in her traditional therapy time and also to have a complete break from it as well. She needs to find joy in moving, otherwise she feels like we are constantly drilling her and focusing on what she can’t do with her body. Years of unceasing therapy can cause children to wonder if there is something wrong with them that they and others cannot accept. We have arranged Maya’s schedule to include activities she enjoys like yoga, swimming and therapeutic riding. These activities are fun for her and keep her moving, while offering her variety in her schedule to keep things exciting and fresh. When she has a break in her school schedule, we are likely to arrange an intensive therapy session, such as 3 vision therapy sessions in 1 week.

FIND OUT WHAT THE CHILD ENJOYS

All children, and adults too, learn more easily when they are enjoying what they are doing. Often, though, for children with CP, learning skills are presented in a dry and repetitive way. It is no wonder that they lose interest.

When Maya was a toddler a developmental pediatrician suggested that we pay attention and support at least one thing Maya enjoys doing. For her it was listening to music. His suggestion was a great one. By focusing on what she finds pleasurable we try to pair some of her learning goals with what she likes to do. She can be having such a good time that she doesn’t even notice that she is learning!

In addition, we have found that when she becomes interested, or even passionate about something, it seems to kick start her motivation in other activities. As an example, when Maya was six years old she became very excited about playing cards. She has a vision impairment and it’s pretty difficult for her to manipulate things with her hands. But she was determined. It began very naturally with her just moving cards around on the floor and then slowly trying to pick them up one at a time. Then she started studying different aspects of the cards and she worked to decipher them from one another. She practiced constantly and as she developed new skills she became motivated to continue and play more difficult games. One thing led to another and now playing cards is one of her favorite things, but it also led to interest in board games and solving puzzles, something I never thought would be possible for her.

Motivating your child with CP- 3

HAND OVER HAND IS NOT HELPFUL

When therapy is “done” to a child (like a car mechanic fixing a part) it is ineffective. The literature on brain plasticity shows conclusively that initiation by the individual is a key ingredient for learning, for change.It is important for children with CP to find ways to discover on their own. Even very little discoveries can be helpful.

SET GOALS

I have found great value in tailoring Maya’s activity schedule to specific goals. Having these goals in mind helps us target how she should spend her time, in therapy and in other areas of her life. As she has gotten older she has become increasingly involved in setting her own goals. It has been useful to prioritize her goals in terms of what she needs, what she likes and when it is appropriate to focus on some things and leave other things for later.

For instance, this year we have prioritized improving her vision. It became clear to us that Maya’s academic progress was being impeded by vision problems. She has attended vision therapy, with periodic intensives, to get a better handle on reading and distinguishing words.

Last year Maya said she wanted to work on dressing herself. I set up a series of OT intensives while she was on her school break. She had her own “homework” to do regarding these goals and she took her assignments seriously.

One important aspect of setting goals is to make the goals achievable. Some tasks may need to be broken down into tiny steps so that the child experiences success. Without a feeling of accomplishment no one wants to move forward.

Motivating your child with CP- 4

MAKE A SCHEDULE

It is important for the child and the caregivers to make a schedule for rehabilitation activities. Because children with CP often have so many areas in need of attention, it would be conceivable to do therapy all day every day.  However, that can negatively impact on the child’s and the family’s quality of life. Everyone needs a break.

When I think Maya (or I) am getting weighed down with too much therapy I ask myself “What is this or that rehabilitative work adding to Maya’s life?” We try to arrange Mays’s rehabilitation work with an equal balance of just plain fun and relaxation time. As Maya has gotten older we actively include her in developing and knowing her schedule. This makes her a part of the process and gives her a sense of ownership over her time.

ENLIST OTHERS

We have found that sometimes other people (not her parents) can motivate Maya in a way that we can’t. It can be natural, on occasion, for a child to pay more attention to a therapist or doctor than to a parent – even when the professional says the same thing that the parent said. I have found that sometimes I ask an OT or PT (or even a peer) to encourage Maya or redirect her because my words don’t seem to be getting through to her.

Motivating your child with CP- 5

All in all, it is hard to find the right balance between encouraging, cajoling, insisting and bribing the child with CP to be motivated to work to decrease their limitations. Determining where to push and where to back off isn’t easy and may change over time Also, the range of motivation for children is enormous; some children are more resigned to their status quo than others.  This is true of children without disabilities too. Each of us has a different personality and character and we ultimately have to embrace some of these qualities. Motivation itself varies with stress level, maturity, developmental age, the experience of success and the relationship between the child and the caregiver.

Jennifer is a parent who has struggled to identify and support her child’s motivation,

“Our 14-year old son has truly been difficult to motivate. Despite our best efforts and for reasons we may never understand, maybe he tried and failed too many times, the expectations were too high, the tasks were too difficult, or the medications wore him out, we have learned to give him a break and give ourselves a break. We take time to reset, renew and meet him where he is at rather than where we know his capabilities lie. Sometimes this is the best we can do.”

It’s not easy to let go of possibilities if you believe your child’s potential is unmet. Each parent has to be comfortable with the decisions he or she makes in deciding when to push and when to pull back. One tool I have found helpful in building balance into our daily life is the F-words. The F-words framework was deigned to help families who have children with disabilities approach their child’s development holistically.

The F-words include the following areas of focus:

  1. Function
  2. Family
  3. Fitness
  4. Fun
  5. Friends
  6. Future

    Motivating your child with CP

    Cerebral Palsy: The Six ‘F-Words’ for CP

You can read more about the F-words on the CanChild website: (https://www.canchild.ca/en/research-in-practice/f-words-in-childhood-disability

Using the F-words doesn’t have to be a labor-intensive exercise. Over the years I have naturally incorporated them into a mental checklist. Whenever I feel overwhelmed or just wonder how we are doing as a family, I self-assess whether I think we may be neglecting one or more of these areas. The part that can be difficult is adjusting schedules to make room for what you may be lacking.

Establishing a routine for checking in with yourself and your family can help you master the art of knowing when it’s time to shift your energy around and also feel confident in doing so. Every time I have made an adjustment to reallocate our time and energy to honor one of these areas it has strengthened our family and sometimes changed our perspective and approach to raising our daughter.

CPRN Streamlines Its Cerebral Palsy Registry Elements

The Cerebral Palsy Research Network (CPRN) has posted an updated version of its Cerebral Palsy Registry Elements on its website.  The CPRN Clinical Registry is a database of patient characteristics, interventions and outcomes for people with cerebral palsy (CP) treated at a CPRN site.  The CPRN Registry is built to accelerate the pace of research for CP in the United States.  It was established in conjunction with the strategic plan for cerebral palsy developed by the National Institutes of Health. The cerebral palsy registry elements were originally developed by a broad panel of CP experts that treat people with CP and conduct clinical research.

The updated version of the CPRN Registry Elements (RE) was created to facilitate the data transfer process from participating sites gathering data in their institution’s electronic medical records (EMR) to the CPRN Data Coordinating Center at the University of Utah Department of Population Health Sciences.  The revised RE:

  • Simplifies the number of elements found in the original specification,
  • Provides data definition for all elements,
  • Includes mappings to elements in the Epic EMR,
  • Enables searching so that researchers can easily find elements that are collected in the registry.

The CPRN Registry is currently approved for data collection at 20 sites in the network with active data collection started at 12 sites.  Other sites are in the process of preparing to collect data through their respective EMR systems.  The CPRN Cerebral Palsy Registry currently has more than 2,000 unique patients and is being used to support a broad array of research initiatives for CP.  Patient data is stored securely at the University of Utah’s Center for High Performance Computing. 

The streamlined CPRN Registry Elements are a critical milestone in getting the data we are collecting at our sites into the CPRN Registry in Utah so it can be used to support our manyfold research concepts.

CPRN Advances Multiple Study Concepts

Overview sessions were followed by small group working meetings.

The Cerebral Palsy Research Network (CPRN) advanced 12 studies during its two-day investigators’ meeting in Ann Arbor, Michigan last week.  The meeting enabled study leaders to engage in deep discussions about study concepts, designs and execution with multiple medical discipline leaders across the network.  Twenty-seven sites throughout the US and Canada were represented by the 36 attendees at the meeting.  The format of the meeting, a series of small group breakouts and informational sessions, was a key factor in the value of the time spent working through important study decisions and directions.

Laurie Glader, MD, Boston Children’s Hospital

“This meeting was truly inspirational,” said Laurie Glader, MD, a pediatrician from Boston Children’s Hospital. “It allowed clinicians and researchers to bring their passions about advancing research for the CP community together. Ideas from multiple perspectives were explored, reflecting the multi-disciplinary nature of CPRN along with the breadth and depth of what is possible through the network.”

The research that was discussed directly addressed ideas from the Research CP patient-centered agenda that was co-developed by CPRN and CPNOW.  Study concepts under development include:

  • Comparative effectiveness of medical and surgical spasticity treatments
  • The effect of physical therapy dosage on outcomes after orthopedic surgery
  • The role of body composition and strength in the long-term health of adults with CP
  • Health care transition
  • Shared decision making prior to surgical interventions.

Existing studies that are enrolling or preparing to enroll patients were another substantive topic including:

  • CP genetics
  • Epilepsy in CP
  • Adult health, stigma and chronic pain
  • Intrathecal baclofen pump quality improvement
  • CPRN’s clinical registry and
  • CPRN’s newly launched Community Registry accessible at mycerebralpalsy.org.
Small group breakouts enabled deep dives in study aims and implementation.

“I left this meeting knowing that the CP community’s research needs will finally be addressed in a comprehensive, strategic and meaningful way,” said Michele Shusterman, President of CP NOW and CPRN’s director of community engagement.  “The commitment and passion of this group’s energy was palpable and inspiring. It won’t be long now until the answers to some of our most pressing concerns will start rolling in and lead to better care and treatment for people with CP. “ 

Investigators leading the efforts discussed will use the learning from this meeting to tune their study aims and implementations. The collaborations at the CPRN investigator meeting enable months of work to be completed in just a few days!

CPRN Investigators Convene at University of Michigan

The Cerebral Palsy Research Network (CPRN) investigator committee members arrived in Ann Arbor on Wednesday, May 1, 2019 in preparation for the annual CPRN Investigator meeting. Thirty-five research investigators, including four clinicians from new “candidate” sites, will meet for two days on the University of Michigan campus to advance its funded studies and new concepts.  This gathering allows the study groups within CPRN to have focused time to make rapid progress on their study development by finalizing data collection forms, streamlining enrollment, resolving outstanding research implementation questions, and conceiving of new study ideas for cerebral palsy research.

The CPRN investigator meeting kicked off Thursday with an update on the CPRN Clinical Registry and overall network progress.  Study group leaders then provided insight into the status of their study and the important advances to make during the meeting.  Most of the meeting is conducted in smaller breakout groups and world café style meeting sessions to advance the studies and new concepts.  CPRN’s goal for the meeting is to ensure the success of its funded research and to accelerate new and existing research concepts toward grant opportunities.

“We are excited to host the 2nd annual CPRN Investigator meeting here at University of Michigan,” said Ed Hurvitz, MD, Chair of Rehabilitation Medicine and CPRN executive committee member.  “We believe that the growth and success of CPRN is fundamental to improving outcomes for people with cerebral palsy.”