PCORnet Autoimmune and Systemic Inflammatory Syndromes Collaborative Research Group (ASIS CRG) Awards Grants to Study Reproductive Issues in Women and IBD in Older Adults


PCORnet Autoimmune and Systemic Inflammatory Syndromes Collaborative Research Group (ASIS CRG) Awards Grants to Study Reproductive Issues in Women and IBD in Older Adults




CreakyJoints to Facilitate Grant Program

UPPER NYACK, NY (May X, 2018) – CreakyJoints today announced that the PCORnet Autoimmune and Systemic Inflammatory Syndromes Collaborative Research Group (ASIS CRG) has selected three projects to each receive a $5,000 grant to assist research teams in developing research protocols within the National Patient-Centered Clinical Research Network (PCORnet), which will aid in the submission of study applications to the National Institutes of Health (NIH), the Agency for Healthcare Research and Quality (AHRQ), and other entities who fund medical research. ASIS CRG is led by W. Benjamin Nowell, Ph.D., MSW (ArthritisPower (AR-PoWER PPRN)), Director of Patient-Centered Research, CreakyJoints, and Peter Merkel, M.D., MPH (Vasculitis PPRN).

In addition to supporting the development of research protocols, the year-long grants (May 2018-April 2019) also cover preliminary activities such as baseline data collection and stakeholder participation costs. Two awarded projects focus on the reproductive health of younger women with autoimmune disease and the third considers the treatment experience of inflammatory bowel disease (IBD) in older adults.

“These grants will jump start researchers’ ability to hone their research protocols to make them appealing for future funding by major sources of Federal research support, like the NIH or AHRQ,” stated Dr. Nowell. “In selecting projects, ASIS CRG identified teams who can scale their efforts to include large patient populations.”

Understanding the Reproductive Concerns of Women with Autoimmune Disease
Megan Clowse, M.D., from Duke University is the principal investigator of the first project titled “A Reproductive Health Awareness and Comprehension Needs-Assessment of Pediatric Rheumatology’s Parents, Teens, and Young Adults”. The project addresses the concerns of parents and children upon receiving a diagnosis of a pediatric rheumatic disease on fertility, pregnancy, and the safety of contraception.

“The long-term goal of this project,” explains Dr. Clowse, “is to ensure that all parents and patients affected by a pediatric rheumatic disease will have access to the information they need to answer their fertility and contraception questions, and plan for future childbearing and family planning. This grant will help us take the first step towards addressing this issue by using focus groups to identify the patient’s key concerns and questions, their barriers experienced to obtaining the information they desire, and their ideas to overcome these barriers.”

The second project, “Pregnancies in women with Lupus in the Carolinas Collaborative (PLiCC) Cohort,” also has pilot funding from the Clinical and Translational Science Institute (CTSAs) at Duke University and Medical University of South Carolina (MUSC). It will study the frequency and associated causes for preterm birth in women with lupus, with the goal of identifying strategies to prevent preterm deliveries. Studying pregnancy in women with lupus is challenging due to the relative rarity of the condition. Using the clinical data research network (CDRN) and the common data model (CDM), this project will aim to identify best practices to use the available data to improve the care provided and the outcomes of pregnancy.

Uncovering the Experience of IBD in Older Adults
Although inflammatory bowel diseases (IBD) are traditionally considered diseases of the young, fifteen percent of new cases occur after age 65. However, there have been very few studies of the condition in older adults. Dr. Bharati Kochar, M.D., MSCR at University of North Carolina at Chapel Hill, will lead the third grant project on the “Management of Inflammatory Bowel Diseases in Older Adults” to better understand how age impacts the clinical assessment of risks, benefits and dosing of immunosuppressive therapies, such as infliximab. Age-related changes suggest that benefit-risk calculations of immunosuppressive therapies may need to be adjusted for older adults. This project will leverage and extend the work being done by another PCORnet study, CHOICE (Comparative Health Outcomes in Immune mediated disease CollaborativE) led by Dr. Jefferey Curtis, M.D., at the University of Alabama in Birmingham and CO-PI for the PCORnet Patient Powered Research Network, ArthritisPower. Following this pilot, the research can be expanded to investigate changes in the effectiveness of various biologic agents that result from older age in other autoimmune and inflammatory disease conditions.

The Autoimmune and Systemic Inflammatory Syndromes Collaborative Research Group (ASIS CRG) was formed to drive multi-network research within PCORnet. The Group is composed of patients, clinicians, investigators, and other stakeholders focusing on three critical areas of patient-centered research, 1) prevalence and pathway to diagnosis of autoimmune/systemic inflammatory syndromes; 2) comparative effectiveness and safety of immunosuppressive and immunomodulatory agents; and 3) reproductive health issues in autoimmune/systemic inflammatory syndromes, which disproportionately affect young women.

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

About CreakyJoints
CreakyJoints, founded in 1999, is the go-to source for millions of arthritis patients and their families world-wide who are seeking education, support, advocacy, and patient-centered research. CreakyJoints is part of the Global Healthy Living Foundation, whose mission is to improve the quality of life for people with chronic illness. For more information and to become a member (for free), visit www.CreakyJoints.org.

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

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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.

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