ORGANIZATIONS & GROUPS

This glossary is not intended to be a collective index of all organizations or groups who have been part of patient inclusion in rheumatology research. Groups mentioned are associated with the posts on the Pathway. As we build out the tool, the Glossary will grow!

If you want to learn more about the Glossaries, watch the video below:

The ACTion Council was created in 2015 and unites a global representation of key stakeholders in the rheumatology research community to record the history of patient engagement and track its continued expansion so efforts are not duplicated, value measurements can be improved, and new initiatives can evolve from existing successes.

American College of Rheumatology (ACR) is a professional membership organization whose mission is to empower rheumatology professionals to excel in their specialty. They are committed to improving the care of patients with rheumatic disease and advancing the rheumatology subspecialty. https://www.rheumatology.org/

Arthritis Consumer Experts/JointHealthⓇ is a national organization that provides free, science-based information and education programs in both official languages to people with arthritis. https://jointhealth.org/  

The Arthritis Foundation boldly pursues a cure for America’s #1 cause of disability while championing the fight against arthritis with life-changing resources, science, advocacy, and community connections. https://www.arthritis.org/

Arthritis Research Canada (ARC) was created in 2000 in recognition of the tremendous potential that research can bring to arthritis treatment in Canada, and indeed, the world. Arthritis Research Canada has earned international attention as a leading arthritis research environment. They have built a strong multi-disciplinary research team of outstanding medical doctors and research scientists, and they willingly collaborate with medical professionals around the world. https://www.arthritisresearch.ca/

Assessment of SpondyloArthritis International Society (ASAS) is an international group of experts in the field of spondyloarthritis. https://www.asas-group.org/

Bristol Myers Squibb (BMS) is a global biopharmaceutical company whose mission is to discover, develop and deliver innovative medicines that help patients prevail over serious diseases. www.bms.com  

The Canadian Institutes of Health Research (CIHR) is Canada’s federal funding agency for health research. Composed of 13 Institutes, it collaborates with partners and researchers to support the discoveries and innovations that improve our health and strengthen our health care system. https://cihr-irsc.gc.ca/

The Center for Devices and Radiological Health (CDRH) recognizes that scientists, clinicians, device developers, and regulators play critical roles in evaluating and communicating the benefits and risks of medical devices. However, only patients live with their medical conditions and make daily choices regarding their health care. Their voice and perspective are critical to understanding the impact of medical devices. https://www.fda.gov/about-fda/fda-organization/center-devices-and-radiological-health

Childhood Arthritis and Rheumatology Research Alliance (CARRA) was founded by a small group of pediatric rheumatologists who aimed to create an investigator-led collaborative research network by establishing a registry. The information is provided by the medical team and by patients and their families. The registry was created to monitor the long term safety of the medications used to treat pediatric rheumatic diseases. https://carragroup.org/  

Clinical Trials Transformation Initiative (CTTI) This group was organized to develop and drive adoption of practices that will increase the quality and efficiency of clinical trials. https://www.ctti-clinicaltrials.org 

Cochrane Musculoskeletal Established in 1993, Cochrane Musculoskeletal (CM) is made up of health care professionals, researchers and consumer representatives that belong to Cochrane, an international, non-profit organization that aims to help people make well-informed decisions about health care by preparing, maintaining and promoting reviews on the effects of health care treatments. They produce reliable, up-to-date reviews of interventions for the prevention, treatment or rehabilitation of musculoskeletal disorders in the form of systematic reviews. CM is also dedicated to making our systematic reviews available to those interested in treatments for musculoskeletal diseases (dissemination). In 1993, they  formed a Consumer Group (CMSG), enlisting patient systematic reviewers to join health care professionals and researchers belonging to Cochrane. Canada https://musculoskeletal.cochrane.org  

The Committee for Medicinal Products for Human Use (CHMP) is the European Medicines Agency’s (EMA) committee responsible for human medicines. The CHMP replaced the former Committee for Proprietary Medicinal Products (CPMP) in May 2004. 

Core Outcome Measures in Effectiveness Trials (COMET) brings together people interested in the development and application of agreed standardized sets of outcomes, known as ‘core outcome sets’ (COS). These sets represent the minimum that should be measured and reported in all clinical trials of a specific condition, but COS are also suitable for use in routine care, clinical audit and research other than randomized trials. http://www.comet-initiative.org  

COVID-19 Global Rheumatology Alliance (GRA) aims to collect, analyze and disseminate information about COVID-19 and rheumatology to patients, physicians and other relevant groups to improve the care of patients with rheumatic disease. Their vision is to bring together the global rheumatology community to curate and disseminate accurate and comprehensive knowledge to advance rheumatology care in the COVID-19 pandemic.https://rheum-covid.org/ 

CreakyJoints/Global Healthy Living Foundation (GHLF) is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. CreakyJoints is a part of the non-profit Global Healthy Living Foundation, which receives funding from grants and sponsorships from pharmaceutical manufacturers, private foundations, and government-sponsored research grants. They frequently collaborate on research with major research institutions and universities. https://creakyjoints.org/ 

European Alliance of Associations in Rheumatology  (EULAR) is the organization which represents the people with arthritis/rheumatism, health professionals (HPR) and scientific societies of rheumatology of all the European nations. The aims of EULAR are to reduce the burden of rheumatic diseases on the individual and society and to improve the treatment, prevention and rehabilitation of musculoskeletal diseases. To this end, EULAR fosters excellence in education and research in the field of rheumatology. It promotes the translation of research advances into daily care and fights for the recognition of the needs of people with musculoskeletal diseases by the governing bodies in Europe. https://www.eular.org/ 

European Alliance of Associations in Rheumatology – People with Arthritis and Rheumatism in Europe (EULAR PARE) is the Committee within EULAR comprised of representatives and musculoskeletal user groups around Europe to work together towards improving the quality of life for people in Europe living with these conditions, with the vision to empower and help them lead full and independent lives. https://www.eular.org/pare.cfm.

European Alliance of Associations in Rheumatology – Young People with Arthritis and Rheumatism in Europe (EULAR Young PARE) was the first youth committee organized to embed the youth perspective into EULAR’s activities.

The European Patients’ Academy (EUPATI) is a pan-European project implemented as a public-private partnership by a collaborative multi-stakeholder consortium from the pharmaceutical industry, academia, not-for-profit, and patient organizations. The Academy was started, developed and implemented as a flagship project of the Innovative Medicines Initiative and continues to be led by the European Patients’ Forum (EPF). As of 2020, EUPATI has already trained 96 patient experts on medicines development, clinical trials, medicines regulations, and health technology assessment. Additionally, EUPATI offers and maintains the Toolbox on Medicine Development, and coordinates a network of national platforms for patient advocates. www.eupati.eu  

European Patients’ Forum (EPF) is an umbrella organization of patient organizations across Europe and across disease-areas. Our 75 members include disease-specific patient groups active at EU level and national coalitions of patients. https://www.eu-patient.eu/ 

European Society for Clinical and Economic Aspects for Osteoporosis, Osteoarthritis, and Musculoskeletal Diseases (ESCEO) ESCEO is a not-for-profit organization, dedicated to a close interaction between clinical scientists dealing with bone, joint and muscle disorder, pharmaceutical industry developing new compounds in this field, regulators responsible for the registration of such drugs and health policy makers, to integrate the management of Osteoporosis and Osteoarthritis within the comprehensive perspective of health resources utilization. The objective of ESCEO is to provide practitioners with the latest clinical and economic information, allowing them to organize their daily practice, in an evidence-based medicine perspective, with a cost-conscious perception www.esceo.org 

European Medicines Agency (EMA) is a decentralized agency of the European Union (EU) responsible for the scientific evaluation, supervision and safety monitoring of medicines in the EU. https://www.ema.europa.eu/en  

FasterCures, a center of the Milken Institute, works to build a system that is effective, efficient, and driven by a clear vision: working with our partners to build a patient-centric system where science is accelerated, unnecessary barriers are overcome, and lifesaving and life-enhancing treatments get to those who need them as rapidly as possible. https://milkeninstitute.org/centers/fastercures  

Food and Drug Administration’s (FDA) evaluation of new medicines (United States). During clinical trials, researchers study whether new medicines are safe and effective for patients and whether the medicine’s benefits outweigh the risks. https://www.fda.gov/home

FOREUM The Foundation for Research in Rheumatology is devoted to promoting research in rheumatic and musculoskeletal diseases (RMDs) as an independent research funding body in rheumatology research. Basic and applied research of highest quality is supported to reduce the burden of disease for people with RMDs. http://www.foreum.org 

FORWARD: National Databank for Rheumatic Diseases is the largest patient-reported research databank for rheumatic disorders in the United States. FORWARD is the organization’s core mission over the last 20+ years—to advance research and discovery in Rheumatology and beyond through human connection and deep insight. As a nonprofit research group, the Forward Databank has over a thousand research publications, over 75 thousand patient participants, and over 100 scientist collaborators. For more, go to https://www.forwarddatabank.org   

Friends of CARRA is an adjunct organization to CARRA, the Childhood Arthritis and Rheumatology Research Alliance. Established in 2006 to support the discovery of a cure and improved treatments for childhood arthritis and related diseases and to increase public awareness of childhood rheumatic conditions.

Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) is organized exclusively for non-profit, educational, and scientific purposes, specifically to facilitate sharing of information related to psoriasis and psoriatic arthritis, networking among different medical disciplines that see psoriasis and psoriatic arthritis patients, and to enhance research, diagnosis and treatment of psoriasis and psoriatic arthritis. www.grappanetwork.org

International Consortium for Health Outcome Measurement (ICHOM) unites an international working group – including patients – to develop the Inflammatory Arthritis Standard Set to enable health care providers to implement the value-based health care framework and compare outcomes that are important to patients with inflammatory arthritis.

International Dermatology Outcome Measures (IDEOM) is a non-profit organization seeking to develop and validate measures throughout dermatology with an initial focus on psoriatic disease. They strive for the establishment of patient-centric outcomes to enhance the research and treatment of dermatological conditions. Launched in 2013, IDEOM seeks to bring together physicians, researchers, government agencies, pharmaceutical companies, payers and patients from around the globe to develop and validate measures throughout the field of dermatology with an initial focus on psoriasis. http://dermoutcomes.org  

International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) We help others, like us, living with autoimmune or autoinflammatory diseases that include inflammatory arthritis as a major clinical component, have a voice – alongside other stakeholders as equals – so, together, we can solve problems that impact education, advocacy, and research. https://www.aiarthritis.org/

INVOLVE was established in 1996 and was funded by the National Institute for Health Research (NIHR) to support active public involvement in National Health Services (NHS) public health and social care research. As a national advisory group, the role of INVOLVE was to bring together expertise, insight and experience in the field of public involvement in research (PIR), with the aim of advancing it as an essential part of the process by which research is identified, prioritized, designed, conducted and disseminated. In April 2020, INVOLVE was taken over by NIHR Centre for Engagement and Dissemination and no longer exists.

Lupus and Allied Diseases Association is an all-volunteer national non-profit dedicated to enhancing quality of life for those impacted by lupus and allied diseases and other conditions of unmet by fostering collaboration among stakeholders, promoting unity in the community, and participating in innovative advocacy, awareness and biomedical research initiatives. https://www.ladainc.org/

Lupus Research Alliance is the world’s leading private funder of lupus research. Established in 2016 – from the merger of the Alliance for Lupus Research, the Lupus Research Institute, and the S.L.E. Foundation – the Lupus Research Alliance was created to improve treatments for lupus while advancing toward a cure. This effort includes raising funds and advocating on behalf of the lupus community in the public policy arena. https://www.lupusresearch.org/

Lupus Foundation of America: Their mission is to improve the quality of life for all people affected by lupus through programs of research, education, support and advocacy. They are focused on achieving the following disease-specific outcomes: 1) Reduce time to diagnosis, 2) Ensure people with lupus have an arsenal of safe and effective treatments, and 3) Expand direct services and increase access to treatment https://www.lupus.org/ 

National Institute for Health Research (NIHR) was established in 2006 under the government’s health research strategy Best Research for Best Health to “create a health research system in which the NHS supports outstanding individuals, working in world-class facilities, conducting leading-edge research focused on the needs of patients and the public”. Since that time, we have transformed research in and for the NHS and helped to shape the health research landscape more broadly. Their mission is unchanged: to improve the health and wealth of the nation through research.  https://www.nihr.ac.uk

National Institute for Health Research – Center for Engagement and Dissemination was developed from the previous organization INVOLVE, which was part of the NIHR.

National Institute for Arthritis and Musculoskeletal and Skin Diseases (NIAMS): Their mission is to support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases; the training of basic and clinical scientists to carry out this research; and the dissemination of information on research progress in these diseases. https://www.niams.nih.gov/

National Psoriasis Foundation (NPF) drives efforts to cure psoriatic disease and to improve the lives of those affected. https://www.psoriasis.org/  

Outcome Measures in Rheumatology (OMERACT), is a global community for the development of Core Outcome Sets in the field of rheumatology. Patients participate as research partners in all phases of the research and are equal members in any OMERACT working group. www.omeract.org, omeractprpnetwork.org 

The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit, nongovernmental organization and was authorized by Congress in 2010. PCORI is the largest funder of comparative effectiveness research (CER) in the United States with the mandate to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policy makers make better-informed health decisions. In addition to requiring patient and stakeholder engagement in PCORI funded research, PCORI also engages the public through its own institutional activities, such as Merit Review, which includes patients and stakeholders as reviewers of research applications, ensuring dollars spent are aligned with research outcomes that are meaningful to the patient population. https://www.pcori.org/ 

PCORnet (National Patient-Centered Clinical Research Network)  began in 2013 with funding from the Patient-Centered Outcomes Research Institute (PCORI), which recognized the need for a faster, more efficient, and more powerful way to conduct patient-centered clinical research. PCORnet offers the capacity to conduct transformative and high-impact clinical research with a unique combination of real-world data, research capabilities, patient partnerships, and broad array of health services researchers. https://pcornet.org/

The Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) works to improve outcomes and provide safe, effective, efficient, timely, patient centered, and equitable care for all children with rheumatic conditions. Their goals are to increase remission and clinical inactive disease rates among children with JIA, improve quality of life including optimal physical function and pain, and support families in managing their child’s condition. https://pr-coin.org/ 

The University of the West of England (UWE) rheumatology group is involved in projects of regional, national and global significance. https://info.uwe.ac.uk/

World Health Organization (WHO) has a primary role to direct and coordinate international health within the United Nations system. https://www.who.int/  

Your Rheum is a group for people in the United Kingdom aged 11-24 years who have a diagnosed rheumatic condition. Your Rheum provides an easy way for young people to understand and get involved in rheumatology research that is relevant to them. Examples include understanding why certain medications have side effects or developing tools such as a  website to help young people manage their condition. The aim of this group is to make sure that the research that happens about conditions such as JIA, Lupus, Fibromyalgia, or Scleroderma means something to the young people it affects, reflecting what’s important to them and not just what is important to the researchers. https://yourrheum.org/