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Evaluation and Perspectives of the ‘OrphanAnesthesia’ Project – An International Survey on Rare Disease Anesthesia

Evaluation and Perspectives of the ‘OrphanAnesthesia’ Project – An International Survey on Rare Disease Anesthesia

Status
Recruiting
Phases
Unknown
Study type
Observational
Source
DRKS
Registry ID
DRKS00039699
Enrollment
385
Registered
2026-03-26
Start date
2026-04-18
Completion date
Unknown
Last updated
2026-08-03

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Anesthetic management of patients with rare diseases and the use and evaluation of information resources supporting perioperative care.

Interventions

Group 1: Single-arm, non-interventional observational study. A one-time anonymous online survey is conducted among anesthesiologists to assess the use and perception of the “OrphanAnesthesia” project

Sponsors

Klinik für Anästhesiologie und operative Intensivtherapie, UKGM, Standort Marburg
Lead Sponsor

Eligibility

Sex/Gender
All

Inclusion criteria

Inclusion criteria: Eligible for participation are anesthesiologists and physicians practicing in anesthesiology worldwide, regardless of their level of experience, area of specialization, or type of institution. Voluntary participation

Exclusion criteria

Exclusion criteria: Decision not to participate in the study

Design outcomes

Primary

MeasureTime frame
Primary outcome is the descriptive assessment of awareness, frequency of use, and overall evaluation of the OrphanAnesthesia platform among anesthesiologists worldwide. WHEN: Assessed once at the time of participation in the online survey during the recruitment period. HOW: Data collection via a standardized, anonymous web-based questionnaire (SurveyMonkey), based on self-reported responses.

Secondary

MeasureTime frame
Secondary outcomes include: - sources of information used for anesthetic management of patients with rare diseases, - attitudes towards and expectations of a potential OrphanAnesthesia app (e.g., impact on usage and patient safety), - identification of areas for improvement and desired features of the platform. WHEN: Assessed once during participation in the online survey. HOW: Data collected via a standardized, anonymous web-based questionnaire (SurveyMonkey).

Countries

Germany

Contacts

Public ContactChristine Gaik

Klinik für Anästhesiologie und operative Intensivtherapie, UKGM, Standort Marburg

gaikc@med.uni-marburg.de+4964215863811

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Aug 10, 2026