Cerebral Palsy Research Network Blog

Archive for September 2017

CPRN Highlighted at AACPDM Annual Meeting

CPRN Chairman Paul Gross presenting at the 71st Annual AACPDM meeting

CPRN Chairman Paul Gross presenting at the 71st Annual AACPDM meeting

The Cerebral Palsy Research Network (CPRN) was a key topic in many sessions at the 71st annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) in Montréal this past week. CPRN kicked off its presence with an informational session with the AACPDM board members and CPRN Chairman Paul Gross on Wednesday, September 12, 2017. The board was very engaged in learning about CPRN’s progress in creating a registry and multi-center clinical research capability. Wednesday evening CPRN held its second annual face-to-face investigator meeting to review the network’s study progress and subcommittee needs. Four site candidates attended the meeting as well as 14 investigators from CPRN.

Dr. Robert Bollo on quality improvement protocols for CPRN

Dr. Robert Bollo presents on his quality improvement protocol for CPRN

On Friday morning, CPRN investigator Robert Bollo, M.D., a pediatric neurosurgeon from Primary Children’s Hospital in Salt Lake City, Utah, joined CPRN leaders Amy Bailes, P.T. Ph.D., and Paul Gross in presenting CPRN quality improvement initiative to approximately 25 attendees. Dr. Bollo is developing a surgical protocol to reduce infection in the placement of intrathecal baclofen pumps. Later that morning, as part of a panel, Gross presented a free paper on CPRN’s Initial Data Collection on behalf of CPRN’s Clinical Registry Principal
Dr. Amy Bailes presents CPRN's QI methodology at AACPDM.

Dr. Amy Bailes presents CPRN’s QI methodology at AACPDM.

Investigator Garey Noritz, M.D., from Nationwide Children’s Hospital in Columbus, Ohio to a group of approximately 150 attendees.

CDC's Dr. Marshalyn Yeargin-Allsopp talks about CPRN in the AACPDM General Session

CDC’s Dr. Marshalyn Yeargin-Allsopp talks about CPRN in the AACPDM General Session

Friday was capped with a presentation about the capabilities of the CPRN Clinical Registry by Marshalyn Yeargin-Allsopp, M.D., from the Center of Disease Control (CDC) during the afternoon general session on registries and population surveillance to 1,100 attendees. Dr. Yeargin-Allsopp, who has directed the CDC’s effort in CP surveillance since it began in the 1990s, detailed the purpose and capabilities of the CPRN as part of her presentation of the landscape of CP registries in the United States. CPRN is proud to be a part of the annual AACPDM meeting.

CPRN Adds Two Network Sites in Houston

The Cerebral Palsy Research Network (CPRN) welcomes to new sites to the network — UT Health – Houston and Texas Children’s Hospital. Manish Shah, M.D., a pediatric neurosurgeon at UT Health, who treats kids with spasticity and specializes in neuroimaging research, will be the principal investigator for his institution. Aloysia Schwabe, M.D., a physical medicine and rehabilitation doctor and section chief at Texas Children’s Hospital, will lead the CPRN efforts there. Both principal investigators have been proactive followers of CPRN’s research and QI efforts and recently completed the milestones to join the network.

Since Houston is the 4th largest city in the United States, these sites represent important south western diversity and capacity for the network. They will expand CPRN’s representation in Texas by joining charter member site Texas Scottish Rite Hospital from Dallas. These two additional sites bring the total number of CPRN centers in the network to 21. CPRN looks forward to the next phase of these new sites’ involvement which will prepare them to collect data for the CPRN clinical registry.

CPREARCH.NET becomes CPRN.ORG

Canadian Policy Research Network

Canadian Policy Research Network

Generosity begets generosity! The Cerebral Palsy Research Network (CPRN) relaunched its website under the domain CPRN.ORG today. CPRN wishes to acknowledge the incredible generosity of Mr. Robert Goldfarb as well as Carleton University in Canada — including the employees the two staff librarians – Mr. George Duimovich and Ms. Pat Moore — for donating a number of CPRN domains to the Cerebral Palsy Research Network. Because of this wonderful gift, valued at tens of thousands of dollars, the CPRN brand now stands alone clear and strong. Quality – high quality research and quality improvement — is core to the CPRN brand and the impact we hope to have on the extended cerebral palsy (CP) community. CPRN is a predominantly volunteer effort focused on improving outcomes for people with CP. The recognition of this effort by individuals and organizations is a testament to the potential of our impact and the goodwill of the world we live in. We are deeply grateful to Mr. Goldfarb and all of those at Carleton University for our new domain. We hope that our new simplified domain name will make CPRN a singular beacon for the CP community and will be a source of pride for those who helped us to achieve this new and improved domain name. Bookmark cprn.org!