Global RA Network launches Rheumatoid Arthritis Dashboard

Global RA Network launches Rheumatoid Arthritis Dashboard

The new advocacy tool identifies gaps in the delivery of

RA care and treatment around the world

Image of a screenshot of the RA Dashboard

Copenhagen, June 1, 2022 – The Global RA Network (the “Network”) today launched a new powerful advocacy tool – the RA Dashboard – as part of its initiatives to improve models of care for people with rheumatoid arthritis (RA). Developed in collaboration with leaders from 18 RA patient organizations, the Dashboard presents key data about the disease and the delivery of RA care and treatment in Europe and the Americas.

RA is the most common autoimmune inflammatory form of arthritis and affects approximately one in 100 persons worldwide. RA reduces a person’s quality of life and is one of the world’s leading causes of disability. Despite its prevalence and costs to societies, the RA models of care vary from country to country and many gaps and inequalities exist.

“Improving RA models of care across Europe and the Americas requires collaboration between stakeholders, including patient groups, policy experts, government and industry, alongside robust RA data. The RA Dashboard is an easy-to-use tool for visualizing the current status of RA care and for monitoring progress on key components of a country’s RA model of care,” explains Cheryl Koehn, president, Arthritis Consumer Experts, which serves as the Global RA Network’s Secretariat.

Koehn added: “Several countries in the Network reported not being able to access key RA statistics in their country for the Dashboard. In those countries, governments are either not collecting data on RA or are not making it public. If governments are not collecting and sharing data on people living with RA, they will not know the magnitude of the problems or how to fix them.”

“As we’ve learned during the pandemic, data is the evidence that drives sound health care decision-making. However, in Romania, nobody knows exactly how many RA patients there are and what RA’s socio-economic cost is. RA data that is accessible in Romania is often extrapolated from general European data but may actually not reflect the actual numbers in our country,” explained Rozalina Lapadatu, president, Asociației Pacienților cu Afecțiuni Autoimune in Romania. Accessible via the Network’s website at https://globalranetwork.org/ra-dashboard, the Dashboard is currently available for 10 countries. The Dashboard data have been researched and collected by member associations and the Network’s Secretariat using local publicly available literature and existing open data sets of government agencies and research organizations as well as results from the Network’s international survey on models of RA care.

“The Dashboard provides an immediate picture of RA in a country like Italy and how our RA care system fares in comparison to other countries in Europe. No standardized RA model of care exists today in Europe or the Americas. This disparity leads to frustration and disappointment for RA patients whose very lives depend on getting a timely and accurate diagnosis, timely access to rheumatologists, and adequate reimbursement for medications, among other critical elements of an effective RA model of care,” commented Antonella Celano, President of Associazione Nazionale Persone con Malattie Reumatologiche e Rare (APMARR) in Italy. “For example, we’ve found 17% of RA patients in Italy waited more than three months for a first visit with a rheumatologist which is significantly above the recommended time between referral and first appointment with a rheumatologist of no more than four weeks.”

People are encouraged to join the conversation about RA, the need for more data about RA and improved RA models of care on Facebook and Twitter @GlobalRANetwork and by using #RADashboard.

About the Global RA Network

Founded in 2016 by rheumatoid arthritis patient organizations and leaders from 18 countries, the Global RA Network was formed to build international relationships and identify and work on common goals and initiatives to improve the lives of people living with RA around the world. The Global RA Network developed a survey that was launched in 2017 called: “Patient experiences of rheumatoid arthritis models of care: An international survey.

The first crowd-sourced research of its kind designed by RA patients to better learn what their care experiences are like in their country, the global survey highlights self-reported gaps and delays in all five key elements of a standardized RA models of care, including significant delays to diagnosis and specialist access in the countries surveyed, patients not meeting their arthritis specialist often enough, and the need for education/information to increase patients’ confidence to describe RA and improve their ability to care for themselves.

To learn more about the initiatives of the Global RA Network, visit https://globalranetwork.org.

Media contact:

Isabelle Troïtzky – Program Manager, Secretariat of the Global RA Network

Mobile: +1 (514) 220-0085

Email: secretariat@globalranetwork.org

Kelly Lendvoy – Vice President, Communications & Public Affairs, ACE and member of the Secretariat, Global RA Network

Mobile: +1 (604) 379-9898

Email: lendvoy@jointhealth.org

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