Cerebral Palsy Common Data Model Reviewed

The participants in the Cerebral Palsy Research Network (CPRN) completed a cross discipline review of the CPRN registry’s cerebral palsy Common Data Model (CDM) last week. The CDM consists of all of the data elements that have been defined by each of the four discipline groups – non-surgical doctors (developmental pediatricians, neurologists and physiatrists), orthopedic surgeons, neurosurgeons and the physical and occupational therapists. These data elements will be collected as a part of routine clinical visits and surgical interventions for cerebral palsy at participating CPRN sites and form the basis for the CPRN registry. These planned 200 data elements characterize the patient and the interventions (medical, surgical and therapeutic). An additional set of data elements will be entered by the patients and caregivers filling out surveys that characterize patient outcomes.

This milestone is significant for CPRN as it enables the CPRN registry database to be built. Over the coming weeks, the final qualifications will be defined for these elements – data types and ranges – that assure high quality data collection and reliability. Completion of this step enables the creation of the front-end data collection system that will be hosted by the electronic medical record (EMR) system at participating CPRN centers. Both the front end and back end systems are planned for creation in November clearing the path to pilot the CPRN registry in early 2016.

Cerebral Palsy Common Data Model Review

CPRN Data Coordinating Center Staff

CPRN Data Coordinating Center staff led by Dr. Susan Horn

Cerebral Palsy Research Network (CPRN) founder Paul Gross met today with the CPRN Data Coordinating Center staff led by Dr. Susan Horn to review the CPRN Registry Common Data Model. The group reviewed the data elements that have been developed by the CPRN subspecialty groups for demographics, diagnosis, orthopedic surgery, neurosurgery, physical and occupational therapy. The DCC staff also presented the proposed database design to capture the CPRN registry data elements. Significant progress was made on database design, platform selection, integration with the National Institutes of Health Common Data Elements project, data flow between clinical sites and the DCC, and plans for a patient powered registry. The CPRN DCC staff is on track to complete the registry database design in October which will pave the way for the data collection form development that is planned.

The meeting was capped by a brainstorming session with the Health Systems Innovation Research (HSIR) program leader Dr. Rachel Hess. Dr. Hess, who is involved in PCORI’s learning health systems that are part of PCORNet, was excited by the team’s progress. Dr. Hess, Dr. Horn and Mr. Gross generated new ideas on how to maximize the research opportunities presented by the CPRN registry.

Come see CPRN at AACPDM

CPRN founder Paul Gross and network leaders Dr. Unni Narayanan, Amy Bailes, and Mary Gannotti, will be hosting an informational session about the status of and participation in the Cerebral Palsy Research Network at the AACPDM meeting on Friday, October 23rd at 6 pm (location TBA). We will share information about the progress of the network, the CPRN registry development, planned studies, data collection plans, patient reported outcomes and opportunities to participate in the pilot phase of the CPRN registry. All AACPDM attendees are welcome — no prior involvement in CPRN is necessary!

Enhancing Surgical Decision Making in Cerebral Palsy

On July 30th, the Cerebral Palsy Research Network (CPRN) submitted its first application for funding for a CP study entitled “Enhancing Surgical Decision Making for Families of Children with Cerebral Palsy: A Practice-Based Evidence Study” to the Patient Centered Outcomes Research Institute (PCORI). The study team, led by Dr. Rich Stevenson of the University of Virgina, brought together the leadership team of CPRN (Dr. Amy Bailes, Paul Gross, Dr. Susan Horn, Dr. Unni Narayanan, Dr. Garey Noritz and Dr. Jerry Oakes) along with Dr. Diane Damiano from the National Institutes of Health Clinical Center and patient advocate Michele Shusterman of CP Daily Living as investigators. This multi-center observational study will enroll 2500 patients from 18 of the CPRN Network sites to study practice variation and outcomes for lower extremity surgery including orthopedic surgeries and neurosurgery for children with CP. The need for comparative effectiveness research was identified as a key outcome from the NIH Workshop entitled “State of Science and Treatment Decisions in Cerebral Palsy” in November 2014.

You can read an overview of the study on our research page entitled Surgical Decision Making in Cerebral Palsy Study.

A picture of a row of photographs on stands, with the nearest photo depicting Jennifer Keelan climbing the Capitol steps

The little girl who crawled up the Capitol steps 25 years later: Jennifer Keelan and the ADA

Jennifer Keelan climbing the Capitol steps, photo shared with permission from owner/photographer Tom Olin

Jennifer Keelan climbing the Capitol steps, photo shared with permission from owner/photographer Tom Olin

Jennifer Keelan was 6 years old when she participated in her first disability rights protest. After that she participated in a protest every six months! At age 7 she was taken into custody during a protest in Montreal, and at age 8 she became an iconic symbol of the disability rights movement when she insisted on leaving her wheelchair behind to participate in the famous Capitol Crawl. This demonstration is considered the final act that led to the passage of the Americans with Disabilities Act. Jennifer, along with many other adult advocates and historic figures in the disability rights movement, demonstrated to politicians, citizens, and the world that people with disabilities deserve the same human rights and access to society as everyone else. The following website includes some ADA history and a  famous video about the Capitol Crawl which features Jennifer: http://www.historybyzim.com/2013/09/capitol-crawl-americans-with-disabilities-act-of-1990/

It was a few years ago that I first saw footage of Jennifer crawling up the Capitol steps. I was moved to see a such a young child passionately advocating for her civil rights, particularly since she had CP, the same condition as my daughter Maya. So, when the ADA Legacy tour bus came through our local city this summer I was thrilled to see a large photo of Jennifer that documented this bit of history that I could share with my daughter, now the same age as Jennifer when she participated in this protest. Maya’s face lit up when she saw it and she said, “Mom, she has CP like me?!!”. Since Maya is also a young, outspoken self-advocate she immediately identified with Jennifer and I could see how empowered she felt after hearing Jennifer’s story and seeing this image. While I was sharing this moment with Maya, the photographer of this iconic photo, who also happens to be Jennifer’s cousin, Tom Olin, overheard me and asked if we would like to speak with her! One thing led to another and shortly after meeting Tom, I found myself on the phone with Jennifer and her mom Cyndi, her fulltime caregiver.

We spoke again a few days ago and they allowed me to interview them to honor the 25th Anniversary of the passage of the ADA. It was a surreal experience and immense honor to speak with Jennifer and Cyndi Keelan who are tremendously humble about their participation in the disability rights movement and referred to themselves as “merely soldiers.” I was on the edge of my seat hearing their stories and, at times, I was so discouraged and shocked by their family’s current struggles with affordable and accessible housing that I wanted to shake the world and demand an explanation. I was naive to think that 25 years later their story would demonstrate how far we have come in the disability rights movement. Certainly in some respects we have come far, but their experience also speaks to how critical it is that advocacy and awareness continue. The laws that Jennifer and our other historic advocacy leaders have fought for must repeatedly be refreshed with new life and breath, and sometimes this means taking a public stand. Jennifer and Cyndi have found it’s about time for them to do it again.

Getting involved in the ADA movement We found out Jennifer had cerebral palsy when she was 2 years old and were told to put her in a home or put her up for adoption,” Cyndi told me. At the time they were living in Arizona, and because of the lack of services and support in their small town, the professionals at Shriner’s said, “We can’t cure her  and  it’s <caring for her at home> not worth it.” Cyndi recalled that day vividly, “Jennifer’s grandfather, who was with us at the time, said, ‘Oh, bullshit, we aren’t putting her in a home!’ After that day grandpa would put Jennifer on their family’s horse in her t-shirt and diaper for her daily therapy.” After Shriner’s diagnosed Jennifer with CP, Cyndi spoke with her cousin Tommy Olin (he refers to Jennifer as his niece) who had been working as a photographer for disability rights activist Diane Coleman. Tommy, who would become the visual historian of the disability rights movement (and is the current ADA Legacy Tour bus driver), connected the family to the efforts of ADAPT, the disability rights organization founded by Wade Blank a former orderly and assistant administrator at a Denver nursing home. ADAPT became one of the central forces of the disability rights movement. Jennifer joined them for her first protest in Phoenix, Arizona when she was just 6 years old. Jennifer said, “It was pretty cool. A bunch of people in wheelchairs (like herself) fighting for their rights.” It was the first time she said she saw people with disabilities empowering themselves. She wanted to be a part of it.

 

liftphotoTomOlin

Photo of Tom Olin’s original shared with photographer’s permission

It was during this time, 1988, that Jennifer first experienced discrimination. She went out to a restaurant with the members of ADAPT and they were refused service because, as the restaurant staff told them, “People don’t want to watch you all eat.” This sparked a passion in her and was the reason she personally got involved in the movement. “I wanted to be able to go into a restaurant and eat and/or go into a public place and eat.” Jennifer said she saw this as an opportunity not just for herself but for other kids.

When it came to participating in the Capitol Crawl, many of the adult advocates tried to discourage Jennifer’s participation and were concerned about having a child reinforce the image of people with disabilities as childlike. Jennifer said she had to do it and that she wanted to do it for herself, her friend who died a few months earlier, and for the future. She said she wanted to represent her generation. ADAPT founder Wade Blank encouraged Jennifer to follower her heart. At that point Cyndi said that Wade pulled Cyndi away to leave Jennifer to participate.

After the Capitol Crawl, Jennifer and Cyndi helped write the original ADA law, each contributing significantly to the final product. Cyndi wanted to ensure that daycare centers, even if they were not federally funded, could not discriminate against children with disabilities. She also wanted to protect the rights of parent caregivers and asked that they not be penalized or forced to put a family member into an institution to keep their job. Jennifer wanted to make sure she could ride the same bus as her younger sister. “I wanted to be on the bus, and the same bus as my little sister!”

busphotoolin

Photo of Tom Olin’s photo shared with his permission

Tomolin

Photo of photo shared with photographer Tom Olin’s permission

In October of 1990 Jennifer received The “Americans with Disabilities Act Award” for her outstanding contributions to the enactment of the world’s first comprehensive civil rights law for people with disabilities.

After the ADA The passage of the ADA has not solved all of Jennifer and Cyndi’s problems. According to Jennifer, “In some ways we have made a lot of progress but we have also have had a lot of setbacks, gone backwards a bit. People with disabilities do have a lot more physical access; it’s illegal to refuse service to someone because they are disabled.” She believes in some ways we’ve gonebackward as far as housing and maintaining physical access. I often see new construction missing access and not following ADA specifications.”

We have seen this too!

Over the last two years Jennifer and Cyndi have even experienced bouts of homelessness, periodically staying in hotels because of a shortage of accessible and affordable housing in the Denver/Boulder Colorado area where they have lived for 25 years. Many places that are identified as “accessible” still have barriers despite the existing laws. In fact, one apartment community told Jennifer that they would not rent to her if she could not get out of her chair and climb up the steps to the building! Ironically Wade Blank and ADAPT started their disability rights movement in Denver decades earlier and was the reason Jennifer and her mom came to live there. Jennifer and Cyndi are now living in a place offering federally subsidized housing, a place that, because of their federal subsidy, are supposed to be particularly in tune with the needs of people with disabilities and the laws that support them. Instead they have repeatedly had to fight there and in previous housing communities just to have simple accommodations which should have already been in place (i.e having grab bars installed in the bathroom).

Cyndi Keelan wonders if some of these issues have arisen due to the natural focus of investment groups who are often involved in purchasing low income housing for profit-making. At least at their current location Cyndi and Jennifer do not believe their property management group is focused on meeting their needs, even if those needs have been written into law. As Cyndi says, “It’s 25 years later and avoiding ADA law isn’t ignorance, it’s arrogance.” They also report being bullied by some of their current neighbors and the property manager for being disabled. As Cyndi says, “We are still climbing those steps.”—a reference to the Capital Crawl from 25 years earlier.

It was very hard for me to hear these details and believe this kind of discrimination continues. Jennifer and Cyndi have been speaking with local advocacy organizations and leaders and, after filing complaints with the Office of Civil Rights and the Department of Justice, Jennifer spoke out about housing issues at a local ADA event yesterday. Both mother and daughter believe, “We need to educate and reeducate key officials at HUD and Medicaid about fair housing laws, ADA, the Olmstead and Melville Acts.” These are the laws that were established to prevent the kinds of things from happening to Jennifer (and many others) that are still occurring today. And despite the laws that have been established to protect and uphold the rights of people with disabilities Jennifer wisely points out, “You have to demand your rights even if it’s written in law.” banners At this local event Jennifer was able to speak directly with the lieutenant governor of Colorado Joe Garcia and will be meeting again with him next week. While battling discrimination on the disability front, Jennifer continues to pursue an education. She is a senior at Arizona State University online and wants to be a pediatric occupational therapist. Her main goal is to finish her Bachelor’s degree and get in to Arizona school of health for occupational therapy. She wants to work with kids with disabilities, with a particular focus on bringing assistive technology into the classroom to support the kids who need it. Jennifer still sees struggles for kids with disabilities in the school system, particularly getting access to the technology they need to succeed. She worked independently to get her GED because her high school would only offer her a certificate of attendance after placing her in a special education classroom solely because of having an orthopedic handicap. But Jennifer’s capabilities far exceeded what her educators and the school system recognized. As a special education student Jennifer was only taught up to 4th grade level math but once she left high school she advanced to college level math in only one year!

Thank you Jennifer and Cyndi. Thank you for your courage, and determination. By joining the fight to formally secure and honor the rights of all people who have disabilities you and the many other fierce advocates of the disability civil rights movement have offered my daughter and many others the chance for a better life.

JenniferKeelan Cropped

Jennifer Keelan today with her service dog Maya

More on the history of the disability rights movement: “Lives Worth Living” A fantastic documentary film about the disability rights movement

More from Jennifer Keelan From “It’s Our Story” Project–A national initiative to make disability history public and accessible; “we’ve collected over 1,300 video interviews from disability leaders across the country since 2005. Now, we’re making this critical aspect of American history public, accessible and interactive”:

1.  “Climbing the Capitol Steps for ADA”

2. Talking about accidentally getting arrested at an ADA protest at age 7

Adult cerebral palsy outcomes to be added to CPRN registry

The Cerebral Palsy Research Network will expand its registry to include the study of adult cerebral palsy. Research about long-term outcomes for adults with CP was a key focus area identified in the 2014 NIH Workshop entitled “State-Of-The-Science and Treatment Decisions in Cerebral Palsy.” Workshop attendees Mary Gannotti and Deborah Thorpe volunteered to lead the effort to determine how to advance the study of outcomes of adults with CP. After examining which data sources might be most amenable to the study of adults, Dr’s Gannotti and Thorpe approached the leadership of CPRN to inquire about expanding the CPRN registry to include adults with CP. Given the number of CPRN participants that also treat adults and the importance of outcomes in the adult population, the CPRN leadership team invited Dr’s Gannotti and Thorpe to join CPRN and lead the effort to define the adult aspects of the CPRN registry.

Dr. Gannotti will join the leadership team and work with Dr. Thorpe to build an interdisciplinary team of clinicians to define the adult registry extensions and outcome measures. CPRN sites that treat adults will be able to enroll adult patients in the registry as part of their clinic.

Cerebral Palsy Therapy Registry Completed

The physical and occupational therapy subspecialty group finished their initial data element definition on Tuesday, July 14, 2015.  The group, led by CPRN network leader Dr. Amy Bailes, a physical therapist at Cincinnati Children’s Hospital, consisted of Dr. Bailes and eight therapists who treat CP in North America including:

  • Dr. Kristie Bjornson, Seattle Children’s Hospital
  • Dr. Mary Gannotti, University of Hartford
  • Marcia B. Greenberg, UCLA
  • Dr. Karen Harpster, Cincinnati Children’s Hospital
  • Christopher F. Joseph, Kennedy Krieger Institute
  • Dr. Linda Lowes, Nationwide Children’s Hospital
  • Teressa Reidy, Kennedy Krieger Institute
  • Andrea Todd, Nationwide Children’s Hospital

The group has met consistently every other week since April 28th to define the important therapy data to collect during a team clinic visit for individuals with cerebral palsy.  The cerebral palsy therapy registry core will provide important data points about the role of therapy in outcomes in CP.

Cerebral Palsy Orthopedics Registry Completed

The orthopedic surgery subspecialty group finished their initial data element definition on Wednesday, July 8, 2015. The group, led by CPRN network leader Dr. Unni Narayanan, an orthopedic surgeon at the Hospital for Sick Children, consisted of Dr. Narayanan and ten surgeons who treat CP in North America including:

  • Dr. Benjamin Shore, Boston Children’s Hospital
  • Dr. David Roye, Columbia University
  • Dr. Freeman Miller, A.I. Dupont Hospital for Children
  • Dr. Hank Chambers, Rady Children’s Hospital
  • Dr. James McCarthy, Cincinnati Children’s Hospital
  • Dr. Jon R. Davids, Shiners of Northern California
  • Dr. Laura Gill, Nationwide Children’s Hospital
  • Dr. Mark Romness, University of Virginia
  • Dr. Tom Novacheck, Gillette Children’s Hospital
  • Dr. William Oppenheim, University of California, Los Angeles

The group has met consistently every other week since May 13th to define the important data to collect for the cerebral palsy orthopedic interventions. Starting from other established orthopedic registries and current studies, the group focused on which data elements could be leveraged. The surgeons then determined the remaining fields necessary to make a common data model for this aspect of the registry. The cerebral palsy orthopedics registry core will provide a significant base of data for future quality improvement studies and study planning for CPRN.

Cerebral Palsy Diagnosis Data Elements Completed

The non-surgical clinicians subspecialty group finished their initial data element definition on Thursday, July 2, 2015. The group, led by CPRN network leader Dr. Garey Noritz, Director of the Comprehensive Cerebral Palsy Program at Nationwide Children’s Hospital, consisted of Dr. Noritz and twelve clinicians who treat CP around the nation including:

  • Dr. Jan Brunstrom-Hernandez, 1 CP Place
  • Dr. Nancy Clegg, Texas Scottish Rite Hospital for Children
  • Dr. Mauricio Delgado, Texas Scottish Rite Hospital
  • Dr. Laurie Glader, Boston Children’s Hospital
  • Dr. Ed Hurvitz, University of Michigan
  • Dr. Aga Lewelt, University of Florida
  • Dr. Michael Noetzel, Washington University
  • Dr. Gadi Revivo, Rehabilitation Institute of Chicago
  • Dr. Angela Sinner, Gillette Children’s Hospital
  • Dr. Richard Stevenson, University of Virginia
  • Dr. Jilda Noel Vargus-Adams, Cincinnati Children’s Hospital
  • Dr. Amy Viehoever, University of California San Francisco

The group has met consistently every other week since April 23rd to define the important data to collect for the cerebral palsy diagnosis within a clinic setting. Starting from other established registries, the group focused on leveraging best practices in the diagnosis and determining how to make sure that fields could be reliably recorded across a diverse number of centers and clinicians. The diagnosis core of the CPRN registry will be a critical feature for the future study of cerebral palsy.

CPRN sites selected for PCORI application

The study team working on the PCORI application for comparative effectiveness study of surgical interventions selected 18 sites to participate in the grant application. Nearly all of the sites were selected from current participants in CPRN. Below are the site principle investigators (PIs) and the institutions that have been selected. All sites are actively working on completing site specific aspects of their participation in the study if it is funded by PCORI. The application is due to PCORI on July 31, 2015. The sites not currently participating in CPRN have been invited to join the network.

PI Name Site
Michael Partington Gillette Childrens
David P. Roye Jr. Columbia
Elizabeth Barkoudah Boston Children’s Hospital
David A. Yngve UTMB Galveston
Dennis Matthews Children’s Hospital of Colorado
Deborah Gaebler/Gadi Revivo Rehabilitation Institute of Chicago
W Jerry Oakes Children’s of Alabama
Amy Bailes Cincinnati Children’s Hospital
Robert Bollo Primary Children’s Hospital
Freeman Miller AI Dupont Children’s Hospital
Unni G. Narayanan Holland Bloorview Kids Rehabilitation Hospital & The Hospital for Sick Children, University of Toronto
Edward Hurvitz University of Michigan
Garey Noritz, Jeff Leonard Nationwide Children’s Hospital
Aga Lewelt University of Florida Jacksonville
Kristie F. Bjornson Seattle Children’s Hospital
William Oppenheim UCLA
Amy Viehoever UCSF
Rich Stevenson UVA