Clarification of the care situation of patients with Fabry's disease by general practitioners/family doctors or general internists

Clarification of the care situation of patients with Fabry's disease by general practitioners/family doctors or general internists - VEMAH X M. Fabry

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00022897

Enrollment

200

Registered

2020-08-19

Start date

2020-09-01

Completion date

Unknown

Last updated

2025-04-07

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

Conditions

E75.2

Interventions

Group 1: Patients with Fabry's disease and general practitioners are surveyed once with a questionnaire developed specifically for the study on their disease, care characteristics and quality of life

Eligibility

Sex/Gender

All

Age

18 Years to No maximum

Inclusion criteria

Inclusion criteria: The study will include adult patients with Fabry's disease and their general practitioners.

Exclusion criteria

Exclusion criteria: Refusal to participate in the study, patients with cognitive impairments, patients with any language barriers that prevent them from understanding the study or failure to give consent

Design outcomes

Primary

Measure	Time frame
In the questionnaire survey, questions are to be answered by both groups (affected patients as well as primary care general practitioners and specialists in internal medicine): - Is there adequate care for patients with Fabry's disease at the level of primary care providers? - What is the "real-life" care of patients with Fabry's disease in Germany? - By whom are patients with M. Fabry medically treated? - If you are in medical care, is this primarily provided by a family doctor or general practitioner? - Are patients in sole general practitioner/general practitioner care, although they should be connected to special outpatient clinics? - Are primary care providers aware of the importance of multi-organ changes in patients with Fabry's disease? - Are GPs or general practitioners sufficiently informed about the existing specific care structures for these patients? - Is further referral to appropriately qualified institutions carried out when cardiological problems occur? - Will referrals to appropriately qualified institutions be made if cardiac or non-cardiac problems occur, but their course may be influenced by the underlying disease? - How can the medical care of those affected be improved?	—

Measure

Time frame

In the questionnaire survey, questions are to be answered by both groups (affected patients as well as primary care general practitioners and specialists in internal medicine): - Is there adequate care for patients with Fabry's disease at the level of primary care providers? - What is the "real-life" care of patients with Fabry's disease in Germany? - By whom are patients with M. Fabry medically treated? - If you are in medical care, is this primarily provided by a family doctor or general practitioner? - Are patients in sole general practitioner/general practitioner care, although they should be connected to special outpatient clinics? - Are primary care providers aware of the importance of multi-organ changes in patients with Fabry's disease? - Are GPs or general practitioners sufficiently informed about the existing specific care structures for these patients? - Is further referral to appropriately qualified institutions carried out when cardiological problems occur? - Will referrals to appropriately qualified institutions be made if cardiac or non-cardiac problems occur, but their course may be influenced by the underlying disease? - How can the medical care of those affected be improved?

—

Countries

Austria, Germany

Contacts

Public ContactHarald Kaemmerer

Klinik für angeborene Herzfehler und Kinderkardiologie, Deutsches Herzzentrum München

kaemmerer@dhm.mhn.de00498912183025

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Feb 4, 2026