There are many different types of research studies. Some studies aim to improve a particular treatment. There are also studies that are more focused on better understanding how a disease develops. Other studies, especially those conducted in a laboratory, look very specifically at a very small aspect of a disease, and there are studies that look very closely at how children/adults cope with a disease and what limitations there are in daily life. There are studies that are started by doctors who are looking for an answer to a particular question. There are also studies that are started because patients have certain questions. What all these studies have in common is that their goal is to improve the care of people with a particular disease.

There are always different types of studies being carried out simultaneously in the Netherlands. Some of these are large, long-term studies involving many hospitals (inside and outside the Netherlands) and patients, but there are also smaller, short-term studies. At any given time, you or your child may be asked to take part in one of these studies. If so, you will be provided with information about the study and can then decide whether you want (your child) to participate.

To give you an idea of the studies that are currently taking place in the Netherlands, we have listed them below, including the name of the principal investigator and the target group. We have strived to make the list as comprehensive as possible, but some studies may be missing.  If there are studies missing that you think should be included, please let us know. If you have any questions or would like to participate in one of these research studies, please contact KAISZ. They will then contact us.

Dr H. Leavis, UMC Utrecht

This is a questionnaire sent to all physicians who are (potentially) treating patients with Still’s disease, to get a better idea of the number of patients with Still’s disease in the Netherlands and how these patients are currently treated.

• AOSD delphi consensus diagnosis and treatment in NL

Dr. H Leavis, UMC Utrecht, Dr S. Tas. Amsterdam UMC, Dr P van Daele, Erasmus MC

This is a consortium of Dutch rheumatologists and immunologists from academic hospitals and peripheral hospitals who, using a Delphi procedure, have reached consensus on the diagnosis and treatment of Still’s disease in adults. This provides a basis for a Dutch guideline. The aim is to diagnose more quickly and to treat more effectively.

Michiel van der Flier kinderarts- immunoloog/infectioloog WKZ/UMC Utrecht

A research study funded by the EU Horizon 2020 research and innovation programme (grant agreement No 668303) on RNA signatures and other biomarkers in children with a fever. The aim is to develop a new rapid test to reliably determine the cause of the illness in children with a fever: an infection with a bacterium or virus or an inflammatory disease.

Currently, patients at Radboudumc Nijmegen, Amsterdam UMC, Catharina Hospital Eindhoven, St Antonius Hospital Nieuwegein, St Franciscus Gasthuis Rotterdam, Elizabeth Twee Steden Hospital Tilburg and ErasmusMC Rotterdam can participate in the study.

Dr P.L.A.  van Daele, Ersamus MC, Rotterdam

Immunaid is an international EU-funded study with the aim of optimizing the diagnosis, classification and treatment of patients with autoinflammatory diseases. In this study, blood and stool samples are collected from approximately 1000 patients with an autoinflammatory disease and if possible also from their parents. The following disorders are specifically looked at:

• Still’s disease
• Recurrent pericarditis (Inflammation of the pericardium)
• Neutrophilic dermatosis
• Schnitzler’s syndrome
• Vasculitis (Kawasaki disease, Behcet’s disease, Takayasu’s arteritis)
• Chronic fever and inflammation without a known cause
• SAPHO syndroom/CRMO

The multiomics approach is used to look at genes, proteins, cytokines and microorganisms, etc., that may play a role in the development of the disorders listed above. The entire project is expected to take 5 years.

For more information, please visit: www.immunaid.eu

Dr S Vastert, WKZ/ UMC Utrecht

Children with systemic JIA have been treated with the drug Anakinra for several years now. The results of this treatment strategy are in general very good: over three quarters of the patients have no signs of disease activity after one year, and half of the children are medication-free within 1 year. In the long term (after 3 and 5 years) as many as > 90% of the patients have no more manifestations of active disease, hardly ever suffer from joint damage, are growing well and are also feeling well. This treatment strategy with Anakinra as the first drug is therefore very effective for many children with systemic juvenile idiopathic arthritis. ESTIS is a trial that is now being conducted in all academic paediatric rheumatology departments. The study looks at whether for children who respond well to Anakinra, this (burdensome) treatment can also be stopped quickly.

Unfortunately, it is still difficult to predict which group of children doesn’t respond well to this treatment strategy and would therefore be better off taking other medication. This group of children, who could be described as refractory systemic JIA, are further mapped out in ReSysT at the WKZ Utrecht.

Dr J.Swart WKZ/ UMC Utrecht

The goal of a unique international network of Dutch and Canadian researchers under the name UCAN CAN-DU is to lay the foundation for personalized medicine treatment of children with childhood arthritis within 5 years. All 6 academic paediatric rheumatology centres in the Netherlands are collaborating with all 18 academic centres in Canada in this unique project.

Childhood arthritis affects more than 20,000 children in Canada and the Netherlands and has a tremendous impact on the child and his or her family. Sometimes it takes a long time to find the right medication and a third of the children eventually receives biologic medications. Although these expensive biologics have improved the course of the disease, users are more likely to experience serious side effects and discontinuation is often not possible without suffering flare-ups. With personalised medicine, blood tests (biomarkers) can better predict who needs which medicine, with a low risk of serious side effects, and at what point one can start reducing the amount of medication.

https://www.zonmw.nl/nl/onderzoek-resultaten/geneesmiddelen/programmas/project-detail/personalised-medicine/ucan-can-du-canada-netherlands-personalized-medicine-network-in-childhood-arthritis-and-rheumatic-d/

Drs G.E. Legger, BKZ/ UMC Groningen

In this study, all patients in (and outside of) the Netherlands with an autoinflammatory disease are followed for a long period of time. All known data are entered into a European database in order to gain more insight into the course of these diseases and their genetic backgrounds.

All university hospitals are taking part in this research.

For more information, please visit: https://www.printo.it/projects/ongoing/13

Ashna Ramautar, LUMC

This is a research study of children and adults with non-infectious osteomyelitis (bone inflammation). The study looks at the long term outcomes for patients with non-infectious osteomyelitis.

Participating centres: LUMC, A UMC, Erasmus MC and UMCG.

Dr A. Simon Radboud UMC, Nijmegen

The HPO project is a global project that provides a standardized vocabulary of phenotypic abnormalities and clinical features encountered in human diseases and other health problems. The vocabulary not only defines the terms, but also establishes links between the different terms. Such a vocabulary can then be used for the development of all kinds of smart computer programmes, for example to help doctors in diagnosing rare symptoms in patients. We are working hard to make sure that all symptoms of autoinflammatory and autoimmune diseases are also well-represented in this vocabulary, and well-linked to the clinical pictures.

This is not a study in which patients can participate.