Cerebral Palsy Research Network Blog

CP Stories: Why Genetics Matter

“We believe this study will move the needle and help patients and their families.” – Dr. Michael Kruer

As he embarks on a the Cerebral Palsy Research Network’s first publicly funded study into genetic causes of cerebral palsy, Dr. Michael Kruer, Director of the Pediatric Movement Disorders Program at Phoenix Hospital, hopes the landmark research will help transform patient care. 

Working as a dedicated pediatric neurologist, Dr. Michael Kruer is passionate about the young patients in his care and how to improve their treatments and therapies. 

Now, as he launches a three-year study examining how genetic factors connect with a CP diagnosis, he is hopeful the research could lead to better outcomes for many in the CP community. 

“We believe this study will not only move the needle for research but has the potential to impact individual patients and their families,” he tells the CP Research Network.  

Kruer is no stranger to people’s challenges with CP, having dedicated the last ten years to the study of genomics as it relates specifically to the condition. He received the CP Research Network’s first publicly funded (NIH) grant to launch his “Genetics Causes of Cerebral Palsy” study after approaching the network to collaborate on research.  

Five hundred participants and their biological parents will participate at Phoenix Children’s Hospital, AZ, Al DuPont Children’s Hospital, DE, Nationwide Children’s Hospital, OH, Seattle Children’s Hospital, WA, and Children’s Hospital Colorado, CO. 

“The beauty of working with the CP Research Network is it collects information that doctors and therapists enter as they are caring for people with CP at the participating sites,” adds Kruer. “It’s a wealth of information that we’re then able to leverage to try to take the genetics and make sense of it in a way that can impact diagnoses and treatments.”   

The study, which kicked off this month, in unison with CP Awareness Month, will compare the genome (the person’s genetic material and instructions) of people with CP with those of their parents, known as whole-exome sequencing analysis. If a participant with CP has children of their own, then researchers will track changes in the genome of multiple generations of the same family, which will be a first for clinicians. 

Until recently, CP was not known to have a genetic connection. Yet, increasingly research indicates that as many as one in four individuals may have a genetic cause for their CP.  

“Dogma in medicine is hard to change,” admits Kruer. Yet he remains optimistic that perceptions can gradually shift with sound research. Indeed, initial research linking genes to CP is already opening doors to new avenues of treatment for patients. 

“The most cutting-edge genetic technologies are exciting, but it’s only one side of the coin,” he continues. “If you don’t know how that technology relates to a real person and his or her symptoms, what they’ve gone through etc., then I think it’s an incomplete picture.” 

Dr. Kruer will share why genetics matter and detail the specifics of his latest study during a MyCP webinar this evening (Wednesday, March 10) at 8 pm EST. You can register here

If your family is interested in taking part, look for an invitation from your CP clinic at one of the participating sites. We will send you an invitation to our online consent application. Once the family gives their consent, they will receive saliva-based DNA sample collection kits. 

Cerebral Palsy Awareness: Spread the Word!

CP Fact: Cerebral Palsy affects movement and posture for all of those diagnosed.

The Cerebral Palsy Research Network launched a new CP Awareness campaign today in honor of CP Awareness Month.  We have created a set of Facebook (FB) Cover Photo banners with key facts about CP for you to install on your personal FB page. Each day we will be sharing more on our social media pages, and you can help us educate the general public about CP by sharing this information.

You can download one or all of the banners at https://cprn.org/cp-awareness-fact-facebook-covers/.

Spread the word and win a CP Research Network t-shirt or coffee mug!

CP Research Network t-shirt
CP Research Network Mug
CP  Fact: 1 in 3 people with CP will not walk

You can also enter into our drawing* for helping spread the word about CP. 

On Facebook, send us a screen shot from your feed of your updated cover photo and we will enter your name in our drawing.  Send a screen shot from a share of one of our CP Facts with at least five likes and we will enter your name again.  Share all 20 facts that we post this month (each with five or more likes) and we will enter you 20 times! 

On Instagram, share our CP Facts in your story, tag us and we will enter your name in our drawing for each tagged CP fact that you share! We will draw for two winners – one from Facebook, one from Instagram.

To participate in the Facebook drawing, send your screen shots to cpawareness@cprn.org. For Instagram, just tag us on your story on Instagram with every share of our CP Facts.

*Fine Print: You must have a shipping address in the United States to win. Two names will be drawn – one from IG participants and one from FB participants. The limit on entries (screenshots of shares and covers) is 30 for FB and 20 (story tags) for IG. Drawing will happen in the first week of April. Winner can chose between mug or t-shirt in an appropriate size. Shipping will take at least two weeks.

Data Linking Partnership Accelerates Discovery in Cerebral Palsy Research

Datavant - Linking Healthcare Data
Datavant – Leaders in Linking Healthcare Data

Yesterday the Cerebral Palsy Research Network announced a partnership with Datavant Corporation of San Francisco, CA, to enable linking of data sets to accelerate new findings in cerebral palsy (CP) research.  The CP Research Network will initially use data linking technology to facilitate the CP Genetics study we are launching next month.  Data linking allows researchers to combine types of information such as genetics and patient descriptions, from different sources to make new discoveries.  For example, participants in the CP Genetics study will provide saliva to Dr. Michael Kruer’s lab at the University of Arizona to identify new genes that are involved in causing CP.  That genomic data will be linked to the participants’ clinical characteristics, or medical description of their CP, found in our CP registry.  This linkage will allow us to find commonalities between genes and how CP appears in the patient population. 

“It is an exciting time in cerebral palsy research,” said Kruer, a neurogeneticist in the Barrow Neurological Institute at Phoenix Children’s and associate professor at the University of Arizona College of Medicine – Phoenix. “This landmark collaboration will enable new breakthroughs in CP genetics that have the potential to transform diagnosis and treatment.” 

Datavant’s data linking technology is unique because it allows this type of information to be connected independent of the timing of annual hospital visits for CP and the choice to be in the study.  Datavant software generates a unique set of identifiers per patient that stored with a medical record but are devoid of any personal identifying information.  The software can be used by new studies such as the genetics study to find matches between patient records and participants’ genes.  This matching process can help facilitate new discoveries in CP by connecting new study data to our CP Registry. The CP Research Network is actively pursuing other existing study datasets that could be linked with our registry to enable new findings to improve healthcare for people with CP.