Patient-centered research webinar well attended!

Jacob Kean, Ph.D.

Jacob Kean, Ph.D., University of Utah

Last night, Research CP held its fourth webinar on the new paradigm of patient-centered research and patient reported outcomes with Jacob Kean, Ph.D. of the University of Utah. Dr. Kean is an expert in patient reported outcome measures and and also a speech language pathologist. Many thanks to Dr. Kean for his time and insight!

More than 70 people attended the live webinar and engaged in 30 minutes of Q and A. The recorded version if available now. The topic of patient centered research is at the heart of Research CP – a collaborative effort between CP NOW and CPRN – that includes the educational webinar series, collaborative surveys and culminates in a 1.5 day workshop in Chicago in June 2017.

Reminder: Only two days left to apply to attend the workshop. You need to watch webinar #1 to get the application.

Research CP has also completed phase one of the collaborative survey on Codigital. Results of this open community effort will be essential input to the workshop in June to set the patient-centered research agenda for cerebral palsy. More than 300 people were invited and hundreds of research and care ideas were shared and voted upon as part of the first phase of the collaborative survey.

Don’t forget to mark your calendar for the last webinar on patient registries featuring speakers:

  • Megan O’Boyle is the Principal Investigator of Phelan McDermid Syndrome patient powered registry, and
  • Jay Riva-Cambrin, M.D., is a pediatric neurosurgeon and the Principal Investigator the clinical registry in the Hydrocpehalus Clinical Research Network.

The final webinar is on Tuesday, April 4, 2017 at 8 pm ET. Thanks to Michele Shusterman of CP NOW for her support of Research CP and to all of you who are participating and adding value to the research process.

The 4th Research CP Webinar: The Research Conversation is Changing!

Learn about Patient-Centered Research and Outcomes on Wednesday

Don’t miss this webinar, led by Jacob Kean, Ph.D. of the University of Utah, where he will describe the paradigm shift in medical research embodied by “patient-centered research” and its benefit. Learn about the role of patients in research! Dr. Kean will also explain what patient-reported outcomes are and how they differ from other types of outcome measures.

Clinical research is changing. Patient-centered research is focused on what patients care about and what is meaningful to them. Over 300 people are participating in the Research CP webinars. Join the conversation. Tune in on Wednesday, March 29 at 8 pm ET or look for the link to watch the recorded version on March 30.

Please note that there are only five days left to apply for the Research CP Workshop in Chicago in June. Deadline is Friday, March 31, 2017. Participants receive a link to the application after watching the Research CP Overview webinar.

The True Founder of CPRN

Today is National Cerebral Palsy Awareness Day, the day dedicated to creating awareness about the 17 million people worldwide who live with CP every day. In an effort to foster awareness, I want to share my story and hear about your story. I founded CPRN two years ago with a core group of dedicated professionals and along with our community of people with CP, parents, medical practitioners and advocates, we are living CP Awareness, really every day, by trying to improve outcomes for people with CP. We are thankful to Reaching for the Stars who have successfully advocated with Congress for this awareness day for so many years!

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The impetus for starting CPRN is my 12-year-old son William who has spastic diplegia CP as well as hydrocephalus. So while on a daily basis, I am writing grants for funding, working on the CP registry and planning the Research CP workshop, I am also a parent first, who drove to many PT and OT appointments over the years, oiled ball bearings on rusty walkers, modified a treadmill for walking therapy, researched orthopedic surgeries and joined non-adaptive kid’s karate with my son because he was nervous about joining with typically developing children. One of his fellow karate students said to me, “You are a really big kid” as I as the only adult in a sea of 25 children. But this is what you do when you want your son to have this experience and it was the only way he would join.

We are trying therapies and treatments to help our son avoid pain as an adult and to keep him as functional as possible for as long as possible. And we realized that most of the treatments and interventions don’t have long term outcomes research behind them — so how do you choose what works and what is effective? That is why CPRN was developed, to answer some of these questions.

Yesterday, my wife Lori (who also helps to write and edit content for CPRN) and I were at an orthotics appointment at Seattle Children’s Hospital with William because he is in a new type of orthotic called AFO FCs (Ankle Foot Orthosis Foot Combination) developed in Wales by a PT named Elaine Owens. It is traditional bracing but with a modified shoe with a wedge internally and externally to correctly align the skeleton and stretch muscles gradually. Overtime, the wedge becomes lower and eventually the hope is that he will no longer need a modified shoe but perhaps just a lower AFO. Will it work? We don’t know but we hope so. If it works, William will hopefully avoid another orthopedic surgery. The hardest part of some of these therapies is the social and emotional part. Our son William can’t run in these orthotics (yet) so he is worried about recess and how he will have fun with his friends. If he will get teased about his new shoes. It has been hard for him to keep up with his peers without the orthotics. So we “get” what other families go through about trying different therapies. And we are trying to translate our own personal story to a platform that will help others, no matter what type of CP or degree of CP. But “getting it” and “living it” are different so that is why I have partnered with Michele Shusterman of CP Daily Living and CP NOW, who has a different experience with her daughter, to lead the engagement of our community.

The continuum of CP varies greatly…there are some adults and children with CP who use wheelchairs, walkers and crutches and some are more mild and don’t need an assistive mobility device, some are verbal and some are not or somewhere in between, some have typical cognition and some do not or somewhere in between, some have vision issues and some do not…some have hearing issues and some do not; so no matter where someone falls on the continuum, we at CPRN are hoping to help the entire community through a registry and comparative effectiveness research; and it all started with a boy named William.

Along this journey, I have been fortunate to meet many adults with CP and families who are impacted by CP in addition to working with many dedicated and caring PTs, OTs, doctors, researchers and community advocates. Many thanks to the CPRN leadership team and all of the investigators who work so hard every day in their professional lives in addition to CPRN. Thanks to CP NOW for partnering with CPRN on Research CP – our collaborative program of webinars, surveys and an upcoming workshop. It is one way we are trying to educate and keep the conversation going about CP.

So please share your brief story of how CP impacts your life whether you are an adult with CP, a parent or family member, a medical practitioner or a community advocate. Please include a picture too. Send these to Editor@cpresearch.net. CPRN is going to create a Community page called My Story of CP to share your stories and each week, we will highlight one to create ongoing awareness in honor of National CP Awareness Day.

Cerebral Palsy Awareness 2017–“I am aware”

Cerebral Palsy Awareness—“I am aware”

by Michele Shusterman, CP NOW & CP Daily Living

 

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I am aware that CP is the result of an early brain injury or disturbance in brain development that occurs during pregnancy, during birth or shortly thereafter.

I am aware that CP refers to a group of movement disorders that interfere with how the individual initiates, coordinates and controls movement and balance.

I am aware that CP is a spectrum condition where people require different kinds and levels of support.

I am aware that CP is the number one cause of motor dysfunction in children.

I am aware that CP impacts more than 17 million people worldwide.

I am aware that funding for CP research has been dismal for decades.

I am aware that CP affects 1 in 323 children in the US and a large adult population that is often forgotten.

I am aware someone with CP who is unable to speak often can hear, understand and have the same intellectual capability as anyone else.

I am aware that more than 50 percent of people with CP are in chronic pain.

I am aware that parents of babies at risk for CP are scared and have little guidance about what the future holds.

I am aware that some people with CP are competitive athletes.

I am aware that adults with CP have many barriers to securing employment.

I am aware that more than 70 percent of people with CP have sleep disorders (from 2016 Australian data collection).

I am aware that people with CP wish to take part in as much of life’s activities as possible.

I am aware that there are adults with CP who are neuroscientists (i.e Dr. Kathleen Friel), neurologists (Dr. Janice Brunstrom) actors, psychologists, teachers, designers, leaders, business owners, artists, volunteers, advocates, lawyers and more.

I am aware that, in addition to motor dysfunctions, some people with CP may have conditions such as epilepsy, hydrocephalus, vision, hearing and communication disorders, and problems with eating, swallowing and digestion.

I am aware that some people with CP have mental health conditions, such as depression, as well as learning difficulties and more.

I am aware that parents of children with CP must become case managers because educational and therapeutic options are so uncoordinated.

I am aware that there is ZERO US federal money dedicated to studying CP.  ZERO.

I am aware that parents of children with CP cry privately because they feel guilt and fear and are exhausted.

I am aware that parents of kids with CP will do anything to help their child reach their greatest potential.

I am aware that adults with CP need access to doctors who understand the conditions associated with aging and CP.

I am aware that some people with CP hope for a cure and others do not.

I am aware that people with CP are prevented from participating in society because bathrooms, parking, venues and doctor’s offices are still not ADA compliant.

I am aware that we are diagnosing CP too late.

I am aware that people with CP have lots of different kinds of talents and abilities.

I am aware that some parents of children with CP just wish to hear their child say “Mom” or “Dad”, or to clearly understand what they are feeling.

I am aware that the CP community is lacking standards of intervention and care.

I am aware that parents are confused and overwhelmed having to make decisions about major surgical procedures without enough research to guide them.

I am aware that, in adults, traumatic brain injuries and strokes are treated immediately whereas, with babies, we wait years to see how they develop before starting therapy.

I am aware that 1 in 3 people with CP cannot walk.

I am aware that the CP community deserves more support, access to reliable resources and research into effective treatments that improve their participation and quality of life.

I am aware that CP NOW is making a difference by developing educational resource guides, providing community support and funding pilot studies that can be readily implemented to change lives NOW.

Visit cpnowfoundation.org to download your copy of The CP Tool Kit–From Diagnosis To Understanding.

CP Tool Kit

I am aware that CP NOW needs my support to do those things.

I am aware.  Make your donation today!  https://cprn.org/donate/ No amount is too small when we all donate together!

For more information about CP visit cpnowfoundation.org and our blog/resource website at cpdailyliving.com.

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NIH Releases Draft Strategic Plan for Cerebral Palsy

Plan Draft Auspiciously Arrives During CP Awareness Month!

The National Institutes of Health (NIH) released a draft of its strategic plan for cerebral palsy last week and invited the public to comment on it. The Cerebral Palsy Research Network (CPRN) is highlighted in the summary as an outcome of the initial work that formed the basis of the plan. Numerous CPRN leaders participated in the two meetings that formed the building block of the 5-10-year strategic plan.

While the plan accurately captures the recommendations of these two meetings, it contains a lengthy list of “priorities.” The public comment period provides an excellent mechanism for members of the CP community and researchers to comment on the plan and potentially fill in gaps or hone the priorities listed. Organizations are encouraged to consolidate their recommendations and submit them by April 7, 2017. CPRN will leverage is work on the Research CP initiative to provide a set of recommendations to NIH regarding the plan. Others not connected with the Research CP initiative, should consider adding their comments to the plan.

CPRN congratulates Reaching for the Stars, a foundation for hope for children with cerebral palsy, for its efforts to get NIH to create this strategic plan. Their adept focus on Congressional leaders has significantly influenced this initiative within NIH. CPRN also congratulates its partner CP NOW for the creation of its CP Toolkit as it fulfills one of the key recommendations from the NIH strategic plan to create a 100 day resource for families with new diagnoses of cerebral palsy.

Research CP Quality Improvement Webinar Posted

Amy Bailes, PT Ph.D.

Amy Bailes, P.T. Ph.D.

Last night, March 22, 2017, we held our third Research CP webinar featuring Amy Bailes, P.T. Ph.D., speaking on Quality Improvement methodology. Approximately 80 people from across the cerebral palsy community – people with CP, parents, and clinicians — tuned in for an educational and thought provoking presentation and discussion on quality improvement and how it might impact care and treatment for people with CP.

If you missed the webinar, access to the recording and the slides has been posted on the Research CP webinar series page on CPRN which now includes all recordings, upcoming webinar registrations, post webinar surveys, slides and other resources.

Sign up now for next week’s Research CP Webinar #4: Patient-Centered Research and Patient Reported Outcomes, March 29, 2017 at 8 pm ET!

Remember, applications to the Research CP workshop in Chicago are due on Friday, March 31, 2017. A link to the application is provided in the Research CP follow-up email delivered after viewing the first webinar in the series.

Tune in to Tonight’s Webinar on Quality Improvement

Tonight, Wednesday, March 22, 2017 at 8 PM ET, we will conduct our third webinar in the Research CP series. Amy Bailes, P.T., Ph.D., of Cincinnati Children’s Hospital, will present on Quality Improvement methodologies. This webinar will demonstrate how treatments and outcomes can be improved more rapidly than typical clinical research methodologies through an iterative process that includes doctors, therapists, patient families and others working together. Sign up here to get access information for the webinar or the recording afterward.

Research CP is an initiative to set a patient-centered research agenda for cerebral palsy. It consists of a series of webinars in March and the first week of April, a collaborative community survey of research priorities, a workshop in Chicago in June 2017 and a white paper describing the resulting agenda. Research CP is a collaboration of the Cerebral Palsy Research Network (CPRN) and CP NOW and partially funded through a Eugene Washington PCORI award. The initiative started with our first webinar on March 8, 2017 and you can still register to participate in Research CP. The in-person workshop attendance will be by invitation only after a brief application. Applications are due March 31, 2017. Applications are made available upon watching the first webinar. For more information about the Research CP initiative, see our Research CP page on CPRN.

A rough week for wheelchair access–“This is the second and last time we will be coming here!” -Maya, age 10

This week has been rough for wheelchair access. One of the resource guides CP NOW (our nonprofit-cpnowfoundation.org) is working on this year is about empowering people to advocate for access in their local communities. With lots of persistence and partnership me and another local advocate, an adult wheelchair user and ADA consultant, are opening lines of communication with business owners and code and city officials. With the cooperation of many different entities we are establishing processes to ensure basic access is provided in our community. It’s tough, and requires a lot of patience and thick skin, but it’s worth it.

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Maya and I at a local civil rights rally

For those of you who may not be familiar with what kinds of problems wheelchair users face when getting out and about each day, here are a few I can share from JUST THIS PAST WEEK (and most occurred yesterday!):

1. While visiting our new orthopedic surgeon who is affiliated with a very large hospital system, we found a parking lot that didn’t have a single handicapped space that was level or had the mandatory access aisles (striped lines). I had to lift Maya out of the car and carry her to her wheelchair at the back of our van.

2. When asked at the same doctor’s office whether we had a current weight on Maya I said “No” and asked if they had a wheelchair accessible scale. The woman said they didn’t and then laughed nervously. Maya told her it wasn’t funny. She is right.

3. Yesterday when I took Maya for her piano lesson we had to park in a private lot in order to try and safely gain access to the sidewalk because there are no designated handicapped spots or curb cuts nearby. Had I not parked in this private lot I would have had to roll her down the street against oncoming traffic, until we came upon a new curb cut on the next block. In this case I still had to push her wheelchair through grass and rocks to cut through to a small space where the city sidewalk began. She told me she was scared as she fell forward in her wheelchair because it got so bumpy.

4. The place where she has her music lesson doesn’t have a bathroom that can accommodate a wheelchair–yikes.

5. Last night we went to dinner at a new restaurant in town where the building has been remodeled and reconstructed. I mention this because new construction access issues are a hot button for me–no excuses. It was our second trip there and we knew they had access issues with parking but were willing to navigate them because Maya really wanted to eat their pizza again. This is the experience that triggered the quote in the title of the blog. When Maya had to use the bathroom (we didn’t use the bathroom the first time we were there), a manager escorted us outside and around to the back entrance of the building. She was humiliated and let him know it. She said, “This is the second and last time we will be coming here!”. The manager hung his head in shame. I was proud of her for speaking up. Me and the restaurant manager spoke privately and he told me he had already called the owner because he was so upset. Needless to say, this restaurant has been added to my list of local access projects and I am working to address variety of access issues they have.

I could provide more examples, some that are very surprising, but I am saving them for a special CP Awareness post this month about access and inclusion. As I have been saying each day on our facebook page, people with CP and other disabilities wish to have fun too. They want to be a part of society and have the same rights and privledges anyone else has. As a society we have the moral and legal (at least in the US) responsibility to ensure people with disabilities can participate in life’s activities as much as possible and have their most basic needs met. I know meeting individualized support needs is sometimes overwhelming (but sometimes it’s really easy too) and can be confusing for institutions and business owners. This is why communication, education and advocacy surrounding access and inclusion issues are vital. Most of the time, Maya and others with physical disabilities are asking for the most basic human rights–like accessing their doctor’s office, using the bathroom, being able to have school and work accommodations etc. Whenever I speak with local city officials, architects or business owners I often say, “Look, I am not asking for anything extraordinary, but for us to be able to park our vehicle, access the front door and have our daughter safely and privately use the bathroom.” “Is that so unreasonable?”. I have yet to have anyone tell me it is.  And I will remind everyone that there are multiple building codes and laws in the US that have been in place for decades that are meant to ensure access (not everyone follows them, even remotely). Believe me if every business would just have accessible parking and accessible bathrooms, we will have made a tremendous step forward in including Maya and others with physical disabilities in our society.

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Michele, CP NOW nonprofit and CP Daily Living blog

More than 100 attended Webinar #2 on Clinical Research

On Wednesday, March 15, 2017, Research CP, a collaboration between CPRN and CP NOW with a mission to engage patients, families and practitioners to set a cerebral palsy research agenda, hosted its second educational webinar about clinical research and comparative effectiveness. The session was led by Susan Horn, Ph.D, of University of Utah. We appreciate Dr. Horn’s insight. It was recorded so if you missed it, you can tune in.

The program continues to engage the CP community as demonstrated by the fact that more than 100 joined the webinar and the Q and A session went past 9 pm ET. More than 275 people have watched the first webinar on the overview of Research CP.

Also hundreds of people have contributed CP research ideas through the Codigital collaborative survey platform that is part of Research CP! There is still time to submit your ideas. Please take the tour when you first start with Codigtial as it explains the process. (Note: You must complete the first webinar to receive an invitation to the Codigital community survey.)

We have just three webinars left in the Research CP series. Next week on Wednesday, March 22, 2017 at 8 pm ET Amy Bailes, PT Ph.D, from Cincinnati Children’s Hospital, will present on Quality Improvement.

Applications are still being accepted (up until March 31, 2017) to attend the workshop in Chicago in June. Currently we have 45 applicants. After you watch the first webinar which was recorded, there is a link to apply.

Many thanks to all who participated and to Dr. Horn for making a complex subject more relatable for all.

Join the CP Conversation: Don’t Miss Webinar #2 on Clinical Research!

Help to set the future direction for cerebral palsy research by participating in the Research CP webinars! Register now! Be sure to watch our next webinar tomorrow, “Clinical Research and Comparative Effectiveness” presented by Susan Horn, Ph.D., from the University of Utah, on Wednesday, March 15, 2017 at 8 pm ET.

Research CP is engaging the medical and CP communities in a deep dialogue about a prioritized research agenda to find the best CP treatments and outcomes. More than 150 ideas have already been generated and voted upon by this extended group of interested members. Webinar #2 is the second of a five-part webinar series and they are sequenced to watch in order. You should first watch the recorded Webinar #1, which gives an overview of the Research CP initiative, but you can watch Webinar #2 this week and then go back to Webinar #1 to get the complete context. The webinars are weekly through April 4, 2017.

Also, applications are rolling in to attend the Research CP face-to-face meeting in Chicago in June, 2017 limited to only 35 attendees. It is a requirement to watch the first webinar to apply. The application period closes in just over two weeks.

We hope you join us and share your insight. Research is better when we plan together! Research CP is a collaboration led between CPRN and CP NOW!