Universität zu Köln

Schmidt, Tobias, Semler, Oliver, Oheim, Ralf, Grasemann, Corinna ORCID: 0000-0003-1793-4603, Siggelkow, Heide and Barvencik, Florian (2020). Current structure of care and treatment options for patients with rare bone diseases at University Hospitals in Germany. Osteologie, 29 (4). S. 266 - 275. STUTTGART: GEORG THIEME VERLAG KG. ISSN 2567-5818

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Abstract

Medical care for patients with Rare Bone and Mineral conditions (RBMC) require lifelong, multidisciplinary efforts including different subspecialties such as endocrinology, nephrology, orthopaedics, rheumatology, radiology, cardiology, neurology, internal medicine, paediatrics and clinical genetics. National networking and local organization and management of care in RBMC is of central importance and was assessed by means of a national survey. The aim of the study was to identify and characterize the services, organisation and existing expertise concerning RBMC at University Hospitals in Germany. All 32 Centers for Rare Diseases (ZSE) at German University Hospitals were contacted with a questionnaire in 2018. Of those, 15 centers took part in the survey, resulting in a response rate of 47%. The responses revealed differences most pronounced in the level of equipment and diagnostic capabilities. While most centers had implemented tools for patient empowerment, only few centers were involved in research activities in RBMC or offered structured training programs for physicians and medical students. The results of the survey can be helpful to initiate concrete action plans to improve healthcare for patients with RBMC in Germany.

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code Schmidt, Tobias UNSPECIFIED UNSPECIFIED UNSPECIFIED Semler, Oliver UNSPECIFIED UNSPECIFIED UNSPECIFIED Oheim, Ralf UNSPECIFIED UNSPECIFIED UNSPECIFIED Grasemann, Corinna UNSPECIFIED orcid.org/0000-0003-1793-4603 UNSPECIFIED Siggelkow, Heide UNSPECIFIED UNSPECIFIED UNSPECIFIED Barvencik, Florian UNSPECIFIED UNSPECIFIED UNSPECIFIED
URN:	urn:nbn:de:hbz:38-318973
DOI:	10.1055/a-1233-9780
Journal or Publication Title:	Osteologie
Volume:	29
Number:	4
Page Range:	S. 266 - 275
Date:	2020
Publisher:	GEORG THIEME VERLAG KG
Place of Publication:	STUTTGART
ISSN:	2567-5818
Language:	German
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language DIAGNOSIS; FIELD Multiple languages Orthopedics Multiple languages
URI:	http://kups.ub.uni-koeln.de/id/eprint/31897