Project: Producing an Arthritis Value-Framework with Economic Evidence – Paving the Way for Rare Childhood Diseases
| Acronym | PAVE (Reference Number: EJPRD21-081) |
| Project Topic | Arthritis in children and youth is a group of rare and ultra-rare diseases. Children of all ages suffer from joint pain, stiffness and swelling slowly destroying they joints and resulting in life-long disability. Pain, decreased mobility and severe fatigue dramatically impact the child’s everyday quality of life and the life of the entire family. The burden of arthritis is far larger than medication costs. Children suffer - miss school days, play dates, and other childhood milestones. They often have poor mental health, struggle with education and look at a future of low paid jobs or unemployment due to disability. Families suffer – loss of employment, full time, long-term care provision to their child and home tutoring, making up for the many educational demands. There is a dramatic hidden burden of arthritis. The PAVE team is a strong international partnership of 6 countries including clinical leaders, researchers, social scientists and strong engagement with patient organizations. Our team will focus on the unmet needs of children and families and empower them with new ways to address the hidden burden of arthritis. The PAVE team will build a first-of-its kind value framework that will unite the voices of children and families with data-informed calls to action to measure and ultimately reduce the cost and burden of childhood arthritis. Together, we will improve the lives of children living with arthritis, reduce inequities and pave the way for improved lives for people of all ages living with rare diseases. Children with arthritis and their families need a voice. |
| Network | EJP RD |
| Call | 3rd EJP RD Joint Transnational Call for Rare Diseases Research Project (JTC 2021) |
Project partner
| Number | Name | Role | Country |
|---|---|---|---|
| 1 | University of Calgary, Calgary, Alberta, Canada | Coordinator | Canada |
| 2 | Deutsches Rheuma-Forschungszentrum Berlin | Partner | Germany |
| 3 | Kantonsspital Winterthur | Partner | Switzerland |
| 4 | Sant Joan de Déu | Partner | Spain |
| 5 | Sackler School of Medicine, Tel-Aviv University | Partner | Israel |
| 6 | KU Leuven – University of Leuven | Partner | Belgium |
| 7 | INBAR Israeli Arthritis Foundation | Partner | Israel |
| 8 | Cassie and Friends Society | Observer | Canada |
| 9 | European Network for Children with Arthritis and Autoinflammatory Diseases (ENCA) | Observer | France |