Research

Patients with no confirmed diagnosis and a suspected rare disease who are at least 12 years old.

Only patients with statutory health insurance can be included in the project.

Downloads:
Information flyer

Website
Website ZSE-Duo

Consortium management
University Hospital Würzburg - Center for Rare Diseases - Reference Center Northern Bavaria

Prof. Dr. Helge Hebestreit
Josef-​Schneider-Str. 4th
97080 Wuerzburg
Tel. +49 (0) 931 / 201-29001
zese@ukw.de
www.zese.ukw.de

Project management at ZSE Ulm
Center for Rare Diseases (ZSE) Ulm

Prof. Dr. Klaus-​Michael Debatin
Ulm University Hospital
Center for Rare Diseases (ZSE) Ulm
Eythstrasse 24
89075 Ulm
zse@uniklinik-​ulm.de

Contact person ZSE Ulm:

Dr. Susanne Müller
Senior physician in neurology
Department of Neurology at the University of Ulm, RKU
Upper Eselsberg 45
89081 Ulm
Tel. +49 (0) 731 / 177-5225

Doctor-​medic Lavinia Bârlescu
Specialist in neurology
Department of Neurology at the University of Ulm, RKU
Ulm University Hospital
Upper Eselsberg 45
89081 Ulm
lavinia.barlescu@uniklinik-​ulm.de
Tel. +49 (0) 731 / 177-5235

Mrs. Bettina Hilbig
Coordination assistance
bettina.hilbig@uniklinik-​ulm.de
zse@uniklinik-​ulm.de

Dr. med. Christiane Imhof
Assistant doctor
Clinic for Psychosomatic Medicine and Psychotherapy
Albert-​Einstein-Allee 23
89081 Ulm
christiane.imhof@uniklinik-​ulm.de
Phone: +49 (0) 731 / 500-61876

Dear patient,
download the necessary forms for participating in the project here and fill out the documents carefully or have them completed by your family doctor.

Documents for project participation:
Patient inquiry form
Registration form at a center for rare diseases

Phone: +49(0)731/500-57080
Fax: +49(0)731/500-57058
Email: zse@uniklinik-ulm.de

Post address:
Zentrum für Seltene Erkrankungen (ZSE)
Eythstraße 24
89075 Ulm

• Center for Rare Diseases, RWTH Aachen University Hospital
• Clinic for Pediatric and Adolescent Medicine, University Medicine of the Ruhr University Bochum
• Frankfurt Reference Center for Rare Diseases, University Hospital of the Goethe University Frankfurt
• Center for Rare Diseases of the Hannover Medical School
• Central German competence network for rare diseases, university medicine of the Otto-​von-Guericke University Magdeburg
• Center for Rare Diseases of the Nervous System, University Medicine of Johannes Gutenberg University Mainz
• Center for Rare Diseases at the Clinic for Child and Adolescent Medicine, University Clinic of the Westphalian Wilhelms University of Münster
• Center for Rare Diseases, Regensburg University Hospital
• Center for Rare Diseases, University Hospital of the Eberhard Karls University of Tübingen
• Center for Rare Diseases, Ulm University Hospital
• Center for Rare Diseases - Reference Center Northern Bavaria, University Hospital Würzburg
• Alliance of Chronic Rare Diseases ACHSE e. V.
• IKK healthy plus
• Techniker Krankenkasse
• Julius Maximilians University of Würzburg - Institute for Clinical Epidemiology and Biometry
• University Medical Center Hamburg Eppendorf - Institute for Medical Psychology
• Cooperation partner: AOK Hessen

Witt S, Kristensen K, Blömeke J, Hebestreit H, Wocker M, Pfister L, Bullinger M, Tüscher O, Deckert J, Graessner H, Lapstich AM, Zwaan M, Mundlos C, Quitmann JH (2023)
[Quality of Life and Experienced Distress of Patients Suspected of having a Rare (Chronic) Health Condition - Initial Findings from the ZSE-DUO Study].
Psychotherapie, Psychosomatik, Medizinische Psychologie 2023 Jan; 73(1): 9-15
Zur Publikation

Schippers C, Volk D, de Zwaan M, Deckert J, Dieris-Hirche J, Herpertz S, Schulz JB, Hebestreit H; ZSE-DUO Arbeitsgruppe (2022)
[ZSE-DUO – dual guidance structure at the centre for rare diseases].
Die Innere Medizin (Heidelberg) 2022 Jul; 63(7): 791-797
Zur Publikation

Hebestreit H, Zeidler C, Schippers C, de Zwaan M, Deckert J, Heuschmann P, Krauth C, Bullinger M, Berger A, Berneburg M, Brandstetter L, Deibele A, Dieris-Hirche J, Graessner H, Gündel H, Herpertz S, Heuft G, Lapstich AM, Lücke T, Maisch T, Mundlos C, Petermann-Meyer A, Müller S, Ott S, Pfister L, Quitmann J, Romanos M, Rutsch F, Schaubert K, Schubert K, Schulz JB, Schweiger S, Tüscher O, Ungethüm K, Wagner TOF, Haas K; ZSE-DUO working group (2022)
[Dual guidance structure for evaluation of patients with unclear diagnosis in centers for rare diseases (ZSE-DUO): study protocol for a controlled multi-center cohort study].
Orphanet Journal of Rare Diseases 2022 Feb 14; 17(1): 47
Zur Publikation