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The Patient-Centered Outcomes Research Institute (PCORI) has been a groundbreaking organization that has transformed research and made it much more patient- and family-centered, and it's about to go away... unless we reauthorize it right now!

REAUTHORIZE

PCORI

REAUTHORIZE PCORI AND MAKE RESEARCH PATIENT-CENTERED

The Patient-Centered Outcomes Research Institute (PCORI) is the leading research institution in the United States dedicated to understanding how available health care treatments and medications compare so that patients and providers have the information they need to make the right decisions. 

 

PCORI IS FUNDING PROJECTS THAT MATTER TO FAMILIES AFFECTED BY THESE CONDITIONS.

The organization has made families affected by neurological disorders and multiple chronic/co-morbid conditions are a huge priority in their research funding.  They have also prioritized mental health, women and minorities-- all of whom are affected deeply by disorders that burden Neuro Connect supporters.

They are also targeting research for chronic pain, which affect a broad swath of the U.S. population. For example, a recent study found an alternative way to manage chronic pain for patients, without using opiates. It also found that patients did better and reduced the likelihood of dependency.

Learn more about some of the ways that mental health and chronic pain are affecting Chiari, EDS, dysautonomia and related disorder populations.

 

PCORI IS FUNDING PROJECTS THAT DIRECTLY IMPACT CHIARI, EDS, DYSAUTONOMIA AND MORE.

PCORI has funded millions of dollars in research for disorders like Chiari, dysautonomia, Ehlers-Danlos syndrome and more-- which are very often brushed aside by other research funders as too obscure to support.

  • PCORI funded registry harness big data

  • $50,000 was awarded to an Ehlers-Danlos syndrome and related disorder consortium

BOTTOM LINE: PATIENTS COME FIRST.

The institute has funded hundreds of studies that are available or underway that can provide patients, their caregivers, and providers with evidence-based guidance on treatment. They have already committed $2.4 billion to research and related projects. PCORI is helping medical professionals make decisions based on what matters to the patients and families. Personal circumstances, preferences and values of the patient and caregiver come first when evaluating research projects for support!

PCORI is the country’s only independent research organization that gives all health care stakeholders a seat at the table. Patients— alongside providers and payers—drive the research agenda and get the information they need to make the best decisions about their health care.

Importantly, PCORI also highlights the importance of disseminating results to patients and caregivers. What's the point of doing big, medical studies... if patients and families never get information that the researchers learn? Sharing this knowledge is super important.

  • $2.8 million was awarded for a randomized clinical trial for pediatric Chiari and syringomyelia patients

  • Over 450 peer-reviewed articles so far have provided the evidence to improve health care for American families

PCORI IS SUCCESSFULLY CHANGING THE MEDICAL RESEARCH FIELD FOR THE BETTER...

...BUT PCORI MAY BE GOING AWAY FOREVER.

Authorization for the Patient-Centered Outcomes Research Trust Fund expires on September 30, 2019. Congress must act to ensure continued support for this critical research helping patients and providers make evidence-based health care decisions that work best for them.

 

If September 30th passes without PCORI's Congressional reauthorization, it will no longer have the authority to fund new grants. Previously awarded grants will then lose their funding

after their initial projects are completed. So, even highly successful PCORI projects will struggle to find funding for further clinical trials and follow up studies.

 

This could be catastrophic to the advancement of research and the momentum of patient-centered research efforts in the future. 

 

Join us on May 6th for the 2019 unite@thehill to tell your Congressional representatives to ACT NOW!

CAN'T JOIN US ON THE HILL? ... YOU CAN STILL ACT!

Visit Friends of PCORI Reauthorization's website and sign your name to show your support of this important institution! Or write a letter to your representatives right now. All walkers at the Bobby Jones CSF's unite@night walks will also have the opportunity to fill out a postcard, highlighting the importance of PCORI and other issues. You can make a difference if we act fast, act often and ACT LOUD!

Advocacy works. Make a difference today.