Global Healthy Living Foundation to Present at the VA Medical Device Registry Summit

UPPER NYACK, N.Y.–(BUSINESS WIRE)–Today, Global Healthy Living Foundation (GHLF) is participating in the VA Medical Device Registry Summit, hosted by the Department of Veteran Affairs (VA) in partnership with other federal agencies, and co-organized by GHLF, to announce the creation of a VA Medical Device Registry. Christine Stake, PhD, MA, a volunteer patient advocate for GHLF and a Patient Governor of the ArthritisPower™ Patient Research Registry will provide a patient perspective to Summit participants. She will highlight the vital role medical device registries can play in alerting patient communities about safety recalls, identifying the brand and serial number of individual patients’ medical devices, tracking and comparing device outcomes, and linking to other relevant data such as patient-reported outcomes.

Today’s #VAMedicalDeviceSummit focuses on how medical device registries can serve patient communities. #ArthritisPower and #BeTTERSAID data provides a vital patient perspective #arthritis @CreakyJoints #patientreportedoutcomes

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The only patient invited to speak about the value of Medical Device Registries from the patient perspective to stakeholders in a session that will include comments from Veterans Affairs (VA) Chief of Staff Peter O’Rourke, U.S. Food and Drug Administration (FDA) Center for Devices and Radiological Health Director Jeff Shuren, MD, PhD, Centers for Medicare and Medicaid Services Administrator Seema Verma (tentative), and American Medical Association Vice-President of Performance Improvement Kathleen Blake, MD (among others), Dr. Stake will describe her personal experience with juvenile hip dysplasia, which resulted in the need for hip replacement surgery at the age of 38. She will also present results from a series of focus groups entitled, “Bringing STakeholders Together for Engagement in Research for the Selection of Arthroplasty Implant Devices” (BeTTER SAID) demonstrating the real world need to disseminate information about medical devices, including how they are selected, and their safety and performance over time, to patients considering joint replacement surgery.

Dr. Stake will make the point that, “As a patient, making the decision to have joint replacement can be overwhelming. A person weighs their own pain and disease state against their ongoing responsibilities to a family and job, when deciding to move forward with major surgery that will require recovery. According to our research, most patients lack adequate information about medical devices that would enable them to weigh risks and benefits and make informed choices about surgery and follow-up.”

Available for Interview:

• Christine Stake, PhD, MA, volunteer patient advocate for CreakyJoints
• W. Benjamin Nowell, PhD, Director of Patient-Centered Research, CreakyJoints and co-principal investigator of ArthritisPower and BeTTER SAID

BeTTER SAID

CreakyJoints is Bringing STakeholders Together for Engagement in Research for the Selection of Arthroplasty Implant Devices (BeTTER SAID) in partnership with the RAND Corporation. Funded by the Patient Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award, BeTTER SAID is a coalition of patients, patient advocates, researchers, clinicians, and health system leaders examining strategies to improve hip and knee arthroplasty device safety. An engaged and informed cohort of patient research partners and stakeholders in the BeTTER SAID network are now available to participate in the design, implementation and dissemination of comparative effectiveness research about arthroplasty (joint replacement). For more information, visit https://creakyjoints.org/research/better-said-about/.

About ArthritisPower

Created by CreakyJoints and supported by a multi-year, multi-million dollar investment by the Patient-Centered Outcomes Research Institute (PCORI), ArthritisPower is the first ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. The free ArthritisPower mobile and desktop application allows patients to track and share their symptoms and treatments while simultaneously participating in research in a secure and easy manner. ArthritisPower Patient Governors serve as gatekeepers for researchers seeking to access registry data or solicit the community to participate in unique, voluntary studies. To learn more and join ArthritisPower, visit www.ArthritisPower.org.

Media Contact: Jessica Daitch | Phone: 917-816-6712 | Email: [email protected]

Find us online:
CreakyJoints: CreakyJoints.org
CreakyJoints Español: CJES.org
CreakyJoints Australia: CreakyJoints.org.au
Global Healthy Living Foundation: ghlf.org
Facebook: facebook.com/CreakyJoints & facebook.com/GlobalHealthyLivingFoundation
Twitter: @GHLForg, @CreakyJoints, #CreakyChats
Instagram: @creaky_joints, @creakyjoints_aus, @creakyjoints_esp
TikTok: globalhealthylivingfnd
LinkedIn: linkedin.com/company/ghlf

About Global Healthy Living Foundation
The Global Healthy Living Foundation is a 501(c)(3) nonprofit organization whose mission is to improve the quality of life for people with chronic illnesses (such as arthritis, osteoporosis, migraine, psoriasis, inflammatory bowel disease, and cardiovascular disease) by advocating for improved access to health care at the community, state, and federal levels, and amplifying education and awareness e!orts within its social media framework. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the digital community for millions of arthritis patients and caregivers worldwide who seek education, support, activism, and patient-centered research through our ArthritisPower® (ArthritisPower.org) Research Registry. In response to the COVID-19 pandemic, GHLF started a Patient Support Program, informed by a patient council made up of people living with a wide range of chronic illnesses, that now serves more than 30,000 people. Via CreakyJoints, GHLF also hosts PainSpot (PainSpot.org), a digital risk-assessment tool for musculoskeletal conditions and injuries, and eRheum (eRheum.org), for telehealth and virtual-care support. Visit ghlf.org for more information.