Congratulations to the Juvenile Idiopathic Arthritis JLA PSP team

Published: 16 October 2020


The Dutch Juvenile Idiopathic Arthritis Research Agenda has received a National PGO Support Impact Prize 2020 for patient involvement. There were 33 applicants, 14 nominees and only 3 jury prizes of 4000 euro each. The awards were made on 1st October 2020. According to the jury report, the JLA methodology was one of the main strengths of the work.

The JLA PSP was led by Casper Schoemaker[1], Anouk Verwoerd[2], and Wineke Armbrust[3]. On behalf of the team, Casper passed the following report on to us from the jury:

“More and more patient organizations want to play a role in scientific research. This project shows how a patient organization can also be involved in the process that precedes this: drawing up a research agenda that gives direction to research that is most relevant for a particular patient group. The Dutch Juvenile Idiopathic Arthritis Parent and Patient organization has given direction to knowledge development. Moreover, in this project the patients have been consulted in a wonderful way: children and young people were invited to formulate what really matters to them. Subsequently, there was excellent cooperation with the researchers in an equal manner, so that it became a joint research agenda from the outset. An appealing example. Wonderful!”

 

 

Congratulations to everyone who worked on the PSP.  The Top 10 was published in February 2020.


 

[1]  Pediatric Rheumatology and Immunology, Wilhelmina Children’s Hospital, University Medical Center Utrecht. Netherlands JIA Patient and Parent Organisation, member of ENCA, Amsterdam. National Institute for Public Health and the Environment (RIVM), Bilthoven.

[2]  Pediatric Rheumatology and Immunology, Wilhelmina Children’s Hospital, University Medical Center Utrecht. Faculty of Medicine, Utrecht University.

[3]  University Medical Center Groningen (UMCG), Beatrix Children’s Hospital, Dept Pediatric Rheumatology and Immunology, University of Groningen. Dutch Association for Pediatric Rheumatology, Amsterdam.

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