UCP Launches “Speak for Yourself,” a PCORI-Funded Project to Establish a Patient-Centered Research Network for Individuals with Disabilities

FOR IMMEDIATE RELEASE                                  Contact: Randi Moore, (202) 494-4638

Washington, D.C. (May 3, 2016) – United Cerebral Palsy (UCP) has launched Speak for Yourself, a two-year project funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award to address the various barriers to access that discourage or prevent individuals with disabilities from participating in medical research.

Speak for Yourself is a movement that will build a network of individuals with disabilities who are trained and empowered to become directly involved in medical research that improves their health outcomes.

“People with disabilities have long expressed the desire not only for more opportunities to participate in research, but for a voice in the decision-making around the ‘what’, ‘how’, and ‘why’ of disability-focused research. Speak for Yourself aims to empower people with disabilities to work alongside researchers to ensure that the future of research meets the needs of real people,” said Stephen Bennett, UCP’s President and CEO.

Speak for Yourself will include various opportunities for online engagement and access to resources on research participation. Each year of the project will culminate in a one-day convening bringing together advocates and researchers to collaborate on how to build a more dynamic relationship.

“To promote health equity among people with disabilities, we need to pursue research that is meaningful to those most affected. To do so, people with disabilities must have a say in the research process. Speak for Yourself is a part of the solution to transform science and promote patient-centered outcomes,” said Katherine McDonald, PhD, Associate Professor of Public Health at Syracuse University.

UCP believes that relevant and well-informed patient-centered clinical research is essential to advancing healthcare access, quality, and choice for individuals with disabilities. A patient-centered approach to research that encourages individuals with disabilities to provide input on the gaps in evidence, best practices, and direction of disability-focused research is central to creating a life without limits

More information about Speak for Yourself can be found at http://mylifewithoutlimits.org/speak-for-yourself/

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About United Cerebral Palsy

United Cerebral Palsy (UCP) educates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a spectrum of disabilities. Together with a network of affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people with disabilities by supporting more than 176,000 children and adults every day. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence. For more information, please visit http://ucp.org.


About The Patient-Centered Outcomes Research Institute

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work.

 

Study on the Genetic Causes of CP Enrolling Children & Parents

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Study on the Genetic Causes of Cerebral Palsy (CP)

 

The CP Genetic Research Network is currently enrolling mothers, fathers and their children with CP in an international genetic study that aims to identify new genes that cause CP. In turn, these discoveries will lay the foundation needed to improve diagnosis and treatment for affected children. Participation is simple– simply allow them to collect a cheek swab from the comfort of your home.

If you would like to participate or receive more information, please contact Jessica, the CP Genetic Research Network study coordinator at kruerlab@sanfordhealth.org.

 
Click HERE for their study flyer. You can also learn more by checking out their Facebook page.

University Seeking Individuals with Cerebral Palsy for Research on Employment

 

VCU-RRTC

Are you not working but want to work?

Would you like to talk about your experiences with seeking employment?

Can you share 90 minutes to talk on the phone?

You will receive a $50 gift card to use wherever Visa or MasterCard is accepted for your time if you participate in the phone call for this study.

 

Background:

If the answer to these questions is yes, the Rehabilitation Research and Training Center (RRTC) on Employment of People with Physical Disabilities at Virginia Commonwealth University wants to talk with you! They want to talk with people who have cerebral palsy, including transition age youth, who are currently unemployed. Anyone between the ages of 18 and 64 are encouraged to participate! Transition age youth should be 18 years old to 24.

The RRTC is conducting focus groups for people with physical disabilities about their work experiences. They want to know from you what experiences you face when job hunting.

These focus groups will be held over the telephone. You will receive a toll free number if you agree to participate. Everything you talk about with the RRTC will be confidential!

While your participation will not help you find a job, your input is very important! The information that you provide will be very valuable in the development of RRTC resources on work for individuals with disabilities, their support systems, employers and policy makers. If you decide to participate, the consent process is easy and online at:

http://www.vcurrtc.org/focus/index.cfm

If you need any accommodation to participate or have any questions, please contact Grant Revell at wgrevell@vcu.edu or (804) 828-6989.

New Research on Younger Siblings of Children with Autism Spectrum Disorders

The younger brothers and sisters of children with autism appear to be at greater risk of developing the condition than had been thought, according to research published in the Journal of Pediatrics. The study, "Recurrence Risk for Autism Spectrum Disorders: A Baby Siblings Research Consortium Study" found the recurrence rate to be 18%. Previously, the recurrence rates had been estimated to be between 3% and 10%,

New Report Compares Effectiveness of Therapies for Autism

The federal Agency on Health Care Research and Quality (AHRQ) recently conducted a review of the research on autism therapies looking at what evidence is available regarding the effectiveness, benefits, and harms of therapies used to address the core and associated symptoms seen among children ages 2–12 years with autism spectrum disorders. The findings were published in two separate reports, one for clinicians and one for parents titled, "Therapies for Children With Autism Spectrum Disorders: A Review of the Research for Parents and Caregivers."

New Study Reveals Autism Prevalence: 1 in 38

In the first comprehensive study of autism prevalence using a total population sample, an international team of investigators from the U.S., South Korea, and Canada estimated the prevalence of autism spectrum disorders (ASD) in South Korea to be 2.64%, or approximately 1 in 38 children, and concluded that autism prevalence estimates worldwide may increase when this approach is used to identify children with ASD.

Researchers found that  that two-thirds of ASD cases in the overall sample were in the mainstream school population, undiagnosed and untreated. These findings suggest that rigorous screening and comprehensive population coverage are necessary to produce more accurate ASD prevalence estimates and underscore the need for better detection, assessment, and services.

Read or listen for more information about this interesting study.

Access the full journal article from the American Journal of Psychiatry.