Collaborators work jointly on a project or activity for very specific purposes. We provide thought leadership to many of these organizations – representing the voice of the patient in sharing what is important to them when looking for cures.
The Arthritis Foundation is one of more than 80 organizations that collaborate through CTTI. The group works to develop and drive the adoption of practices that will increase the quality and efficiency of clinical trials. We offer thought and scientific leadership, representing arthritis patients needs for two large initiatives:
- Mobile Clinical Trials (MCT): By participating in the planning committees for this CTTI initiative, we provide input that will help increase the quality and efficiency of research studies by allowing patients to take part remotely for some or all study activities. By collaborating with this group, we plan to propose recommendations to overcome the legal and regulatory barriers in the US that inhibit widespread use of mobile technologies in research studies. This may help expand patient recruitment and improve the patient experience, allowing for continuous data collection and fewer patients lost to follow-up. We represent patients in suggesting that new study endpoints are meaningful to those taking part in research studies.
- Real World Evidence (RWE): Real World Evidence studies combine and analyze “real world data” from electronic health records, payment and insurance claims databases, medical registries, patient-generated data and mobile devices to provide insights into important scientific or clinical questions to help create a more accurate picture of patient experiences. By collaborating with this group, we plan to help identify barriers in the US that inhibit widespread use of RWE.
The Arthritis Foundation collaborates with the FNIH, contributing thought leadership for arthritis-related research to accelerate biomedical research and strategies to find cures for arthritis in the United States and across the world. We are currently collaborating on two ongoing research initiatives:
- Accelerating Medicines Partnership (AMP): a new venture that brings together the FNIH, the National Institute of Health (NIH), 10 bio-pharmaceutical companies and several non-profit organizations to work toward a common goal of earlier drug discovery and development for diseases, including rheumatoid arthritis and lupus. As part of this cross-sector partnership, we will be able to share expertise and resources in a way that enables the best informed contributions to science. One critical component of this partnership is that industry partners will make the data and analysis resulting from AMP available to the broader biomedical community.
- The PROGRESS Biomarkers Consortium: a public-private biomedical research partnership managed by the FNIH that endeavors to discover, develop, and seek regulatory approval for biological markers (biomarkers) to support new drug development, preventive medicine, and medical diagnostics. The consortium is helping create a new era of personalized medicine, with more highly predictive markers that have an impact during a patient’s illness or lifespan. Our goal is to combine the forces of the public and private sectors to accelerate the development of biomarker-based technologies, medicines, and therapies for the prevention, early detection, diagnosis, and treatment of disease. This group is currently performing a TARGET Biomarker Study to identify cardiovascular risk in rheumatoid arthritis (RA) patients. The study aims to uncover how different treatments for RA affect cardiac inflammation and seeks to enroll 200 RA patients from more than 35 US cities.
The Arthritis Foundation, in collaboration with the US FDA, is helping define the voice of the patient through a series of patient-focused drug development meeting, conferences, webinars, and focus groups.
- OA Patient-Focused Drug Development (OA PFDD): This series led to the OA Voice of the Patient Report, the foundation for the OA Center of Excellence, by emphasizing which aspects of OA treatments are most important to patients.
- JIA Patient-Focused Drug Development (JIA PFDD): The first event occured on August 2, 2018 where hundreds of juvenile idiopathic arthritis (JIA) patients and families, health care professionals, researchers, and drug developers gathered to share experiences and the issues that matter most to them. The results of this meeting can be found in the JIA Voice of the Patient Report.
OA Action Alliance (OAAA)
Out of that partnership with the Centers for Disease Control and Prevention (CDC), the first coalition focusing specifically on OA, the Osteoarthritis Action Alliance (OAAA) was established in 2011. Since its launch, the OAAA has grown to include over 40 member organizations -- including the International Council on Aging -- representing stakeholders in the fields of arthritis, aging, chronic disease prevention and public health. The Arthritis Foundation supplies mini-grants to this organization that are responsible for the Walk with Ease program which provides resources to reduce arthritis pain through walking.
The Arthritis Foundation is a member of OARSI, an international organization for scientists and health care professionals focused on the prevention and treatment of OA through the promotion and presentation of research, education and the worldwide dissemination of new knowledge. We became a founding member of the OA Task Force in October 2016 to build a better understanding of patient needs across nations and cultures.
In December 2016, the Osteoarthritis Research Society International (OARSI), the foundation's international partner, submitted a paper to FDA requesting that OA be considered as a serious disease. OARSI expressed concern about the growing global population of OA patients, many of whom may experience progressive disability and decreased quality of life. The paper outlined evidence showing that OA fulfills the definition of seriousness used in FDA guidance for accelerated approvals. Based on data collected, OARSI believes the FDA should foster the development of new treatments, which may alter the increasing prevalence and the individual and population burdens of the disease.
OA Foundation International (OAFI)
In October 2016, the Arthritis Foundation began limited partnership work with OAFI around OA Quality of Life. The project will allow for the first ever single effort to ascertain the impact of OA on quality of life using a multi-cultural, multi-lingual survey of patient perceptions. The results from this study will illuminate cultural differences in attitudes about OA care. This survey is expected to begin in the fourth quarter of 2017 and will involve participation from the U.S. and six European and South American countries.
As a collaborator with the NHC, we offer thought leadership, including patient perspectives, on arthritis-related research. The group strives to foster a greater understanding of research needs and accomplishments, as well as foster potential research collaborations.
The Arthritis Foundation understands that dietary supplements are an important interest of the arthritis community and believes that arthritis patients deserve a marketplace in which all supplements are safe and well characterized. With this in mind, we represent patient needs and concerns by offering guidance to the DSQC group as it works to advance the quality and safety of products marketed in the U.S. as dietary supplements.
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