Project Title: TAKAYASUARTERITIS: CLINICAL, IMAGING, MOLECULAR AND THERAPEUTIC CHARACTERISTICS

Participating centers:

1. Rheumatologie, Universitätsspital Basel; Prof. Thomas Daikeler (head: Prof. Diego Kyburz)
2. Kantonsspital St. Gallen; PD Dr.med. Thomas Neumann (head: Prof. Frauke Foerger)
3. Kantonsspital Luzern; Dr. med. Ralph Melzer (head: Dr. med. Ralph Melzer)
4. Rheumatologie, Universitätsspital Zürich, Dr. Mike O. Becker (head: Prof. Oliver Distler)
5. Rheumatologie, Universitätsspital Bern; PD Dr. Lisa Christ (head: Prof. Britta Maurer)
6. Universitätsspital Lausanne, Prof. Camillo Ribi (Service d’Immunologie et Allergie, head: Prof. Giuseppe Pantaelo)
7. Universitätsspital Genf, Dr. med. Michele Iudici (Service de Rhumatologie, head: Prof. Cem Gabay)
8. Universitätsspital Genf, Dr. Med. Geoffrey Urbanski, CdC Immunologie et Allergologie; head Prof. Jörg Seebach
9. Hôpital du Valais – Institut Central des Hôpitaux; Avenue du Grand-Champsec 86, Case postale 800, 1951 Sion, Dr. Med. Laura Moi

BACKGROUND and project rationale

Takayasuarteritis (TAK) is by definition a “rare disease”. It almost exclusively affects women and typically starts in adolescence. Our first study, [https://doi.org/10.1371/journal.pone.0250025], published in PLOS ONE showed a prevalence of 14.5/1 Mio inhabitants in Switzerland and an incidence of 0.3 patients/year [4]. Our data added important information about the value of magnetic resonance imaging (MRI) in diagnosing and monitoring the disease. It also questioned the disease activity criteria, as currently proposed by the European League against Rheumatism (EULAR) [5].

In the last year, together with Prof. Thomas Daikeler of the University Hospital of Basel, the applicant developed a registry about Giant Cell Arteritis (GCA) which is integrated into the Swiss Clinical Quality Management (SCQM) project. A group of vasculitis experts of Switzerland (see co-applicants) revisited and implemented the registry. They expressed a high interest to also establish a Swiss TAK cohort which shall, at a later time point, be integrated in the SCQM patient registry. Based on the fact that the disease is very rare, the vast majority of patients are managed and counselled by physicians at larger medical institutions.

This project is a unique opportunity to reach out to TAK patients and health care professionals throughout Switzerland with the aims to increase awareness of this disease, thereby to substantially shorten diagnostic delay, to learn about different imaging techniques and to identify biomarkers which may help to detect and quantify disease activity and to tailor treatment of these young female patients.

As an add-on project a dissertation was accomplished. As most patients were diagnosed in child-bearing age, learning about the interaction of pregnancy and disease and to improve care in the context of family planning and pregnancy outcomes is of high importance.

For further information please contact the project leader peter.villiger@hin.ch