IDEOM and IFPA Collaborate: Advancing research and right access to care

Stockholm, Sweden 22.08.2023

Advancing Research for Individuals Living with Psoriatic Disease: IDEOM and IFPA Collaborate

The International Dermatology Outcome Measures (IDEOM) and IFPA (formerly the International Federation of Psoriasis Associations) are delighted to announce their collaborative efforts to advance research and enhance the lives of individuals living with Psoriatic Disease. With a shared vision of making a positive impact on this community, both organizations recognize the value of joining forces to advance research, education, and support initiatives; bringing together global networks of patients in the real and digital world with tools and techniques.

Achieving health for all

Psoriatic Disease, encompassing Psoriasis and Psoriatic Arthritis, presents many unmet needs and challenges in care. Early diagnosis of Psoriatic Arthritis is crucial, and the IDEOM has identified the necessity of a validated musculoskeletal questionnaire (MSK- Q) instrument, a tool to help to achieve this goal. IFPA will provide access and extend the tool’s reach to their global member community through various channels and virtual educational workshop. This collaboration will enable IDEOM to directly engage with individuals affected by Psoriatic Disease, fostering a deeper understanding of their needs and concerns.

Impact of the collaboration

One aspect of this collaboration includes improving the understanding of the IDEOM MSK-Q instrument which holds tremendous potential for enhancing the lives of individuals with Psoriasis and Psoriatic Arthritis. The Psoriatic Arthritis Workgroup led by Alice Gottlieb MD, PhD, Joseph Merola MD, MMSc, and Lourdes Perez-Chada MD, MMSc have previously collaborated with patient research partners to improve the content of the IDEOM MSK- Q instrument. This joint research work has led to the development of the instrument that will assess not only Psoriatic Arthritis (MSK) symptoms but also emotional distress, sleep disturbance, and the impact on work and leisure activities. This comprehensive approach ensures a holistic evaluation of the condition's impact on individuals' lives.

"We are very excited about the potential impact that this collaboration can have on the Psoriatic Disease community. By working together, IDEOM and IFPA strive to improve the quality of life for individuals affected by these conditions, empowering them with knowledge, support, and resources’.

Frida Dunger Johnsson, IFPA Executive Director

"The true finish line is when the patient gets to the right doctor and the right treatment, and their disease has minimal to no impact on their quality of life."

Alice Gottlieb, MD, PhD , President INTERNATIONAL DERMATOLOGY OUTCOME MEASURES (IDEOM) Network

Join the workshop

By leveraging their respective strengths and pooling resources, IDEOM and IFPA aim to create a significant and lasting effect in improving the overall well-being of individuals affected by Psoriatic Disease.

• Register your interest for the Workshop at https://connect.ifpa-pso.com/w...

IDEOM and IFPA will also collaborate on social media platforms to raise awareness of the educational workshops. By leveraging their combined networks, these organizations aim to reach a wider audience and disseminate valuable information about the MSK tool. The virtual education workshop aims to ensure the tool's accessibility and comprehensibility, exploring opportunities for translation and making it available to people living with Psoriatic Disease, their families, and caregivers.

IFPA’s endevours to improve the lives of all people living with psoriatic disease and to achieve quality of live for all.

Hoseah Waweru, President, Psoriasis Association Kenya

About IDEOM

The International Dermatology Outcome Measures (IDEOM) is a non-profit organization whose mission is to establish patient-centered measurements to enhance research and treatment for those with dermatologic disease. Perspectives of patients, health economists, payers, physicians, and regulatory agencies are included from the onset. IDEOM aims to establish validated and standardized outcome measures that satisfy the needs of all stakeholders and can be applied to clinical research and clinical practice.

Contact

• For further information or inquiries about IDEOM, please contact Amanda Pacia, IDEOM Association Manager, at amanda@dermoutcomes.org
• More information: https://www.dermoutcomes.org/workgroups/psoriatic-disease.php

About IFPA IFPA, founded in 1971, is the International Federation of Psoriatic Disease Associations, representing over 60 million people living with Psoriatic Disease worldwide. IFPA advocates for progress and serves as a platform for the Psoriatic Disease community to collaborate and create meaningful change.

• How to participate:
• Register your interest for the Workshop at https://connect.ifpa-pso.com/w...
• More information at IFPA | IFPA (ifpa-pso.com)

It’s super inclusive. Everybody can be involved. It will really empower IFPA and empower ourselves too.

Silvia Fernandez Barrio, AEPSO, Argentina