Research

Patients without a confirmed diagnosis and suspected of having a 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

Publications
Publications ZSE-DUO

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

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

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

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

Contact ZSE Ulm:

Dr Susanne Müller
Senior Consultant Neurologist
Department of Neurology at Ulm University, RKU
Oberer Eselsberg 45
89081 Ulm
Tel. +49(0)731/177-5225

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

Mrs Bettina Hilbig
Coordination assistant
bettina.hilbig@uniklinik-ulm.de
zse@uniklinik-ulm.de
Phone: +49(0)731/500-57080

Dr 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,
please download the necessary forms for project participation here and fill out the documents carefully or have them filled out by your family doctor.

Documents for project participation:
Patient questionnaire
Registration form for referring physicians ZSE Duo

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

Postal address
Centre for Rare Diseases (ZSE)
Eythstraße 24
89075 Ulm

• Centre for Rare Diseases, University Hospital RWTH Aachen
• Clinic for Paediatrics and Adolescent Medicine, University Medicine of the Ruhr University Bochum
• Frankfurt Reference Centre for Rare Diseases, University Hospital of the Goethe University Frankfurt
• Centre for Rare Diseases at Hannover Medical School
• Central German Competence Network for Rare Diseases, University Medicine of the Otto-von-Guericke University Magdeburg
• Centre for Rare Diseases of the Nervous System, University Medical Centre of Johannes Gutenberg University Mainz
• Centre for Rare Diseases at the Department of Paediatrics and Adolescent Medicine, University Hospital of the Westphalian Wilhelms University of Münster
• Centre for Rare Diseases, University Hospital Regensburg
• Centre for Rare Diseases, University Hospital of the Eberhard Karls University of Tübingen
• Centre for Rare Diseases, University Hospital Ulm
• Centre for Rare Diseases - Reference Centre Northern Bavaria, University Hospital Würzburg
• Alliance of Chronic Rare Diseases ACHSE e. V.
• IKK gesund plus
• Techniker Krankenkasse
• Julius-Maximilians-Universität Würzburg - Institute for Clinical Epidemiology and Biometry
• University Medical Centre Hamburg Eppendorf - Institute for Medical Psychology
• Co-operation 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].
Psychotherapy, Psychosomatics, Medical Psychology 2023 Jan; 73(1): 9-15
To the publication

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

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 centres for rare diseases (ZSE-DUO): study protocol for a controlled multi-centre cohort study].
Orphanet Journal of Rare Diseases 2022 Feb 14; 17(1): 47
To the publication