Observes people with Fabry disease over time, including pregnancy
Follows people with Fabry disease through routine care, with pregnancy outcomes tracked.
Plain-language title generated from the registry record
Registry title: Fabry Disease Registry & Pregnancy Sub-registry
Key facts
- Where
- Chia-Yi City, Hualien City, Kaohsiung City, New Taipei City, Putz City, Chia-Yi, Taichung, Tainan, Taipei, and Taoyuan City, TaiwanSee the 15 sites
AI summary: who the study is looking for
From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.
The trial is looking for people with a confirmed diagnosis of Fabry disease. Women in the registry who are or were pregnant can also join the pregnancy sub-registry.
- Sex
- All sexes can join.
- Disease stage
- Confirmed Fabry disease, shown by low alpha-galactosidase enzyme activity in plasma or leukocytes and/or a change in the gene for this enzyme.
- Earlier treatment
- Treatment status does not matter. People with or without treatment can join.
- Biomarker or test result
- Low alpha-galactosidase (αGAL) enzyme activity and/or mutation(s) in the gene coding for αGAL.
Main reasons for not taking part
- The record lists no exclusion criteria.
Read by machine on 12 November 2026.
Where in Taiwan
- Chia-Yi CityHospital not named in the registryContact: Trial TransparencyTaking people
- Hualien CityHospital not named in the registryContact: Trial TransparencyTaking people
- Kaohsiung CityHospital not named in the registryContact: Trial TransparencyTaking people
- Kaohsiung CityHospital not named in the registryContact: Trial TransparencyNo longer taking part
- Kaohsiung CityHospital not named in the registryContact: Trial TransparencyNo longer taking part
- New Taipei CityHospital not named in the registryContact: Trial TransparencyTaking people
- Putz City, Chia-YiHospital not named in the registryContact: Trial TransparencyTaking people
- TaichungHospital not named in the registryContact: Trial TransparencyTaking people
- TaichungHospital not named in the registryContact: Trial TransparencyTaking people
- TainanHospital not named in the registryContact: Trial TransparencyTaking people
- TainanHospital not named in the registryContact: Trial TransparencyTaking people
- TaipeiHospital not named in the registryContact: Trial TransparencyTaking people
- TaipeiHospital not named in the registryContact: Trial TransparencyTaking people
- TaipeiHospital not named in the registryContact: Trial TransparencyTaking people
- Taoyuan CityHospital not named in the registryContact: Trial TransparencyTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorTrial details
- Who runs it
- Genzyme, a Sanofi Company
- Trial code
- NCT00196742
- Record updated
- 14 October 2026
- Original description
The Fabry Registry is an ongoing, international multi-center, strictly observational program that tracks the routine clinical outcomes for patients with Fabry disease, irrespective of treatment status. No experimental intervention is involved; patients in the Registry undergo clinical assessments and receive care as determined by the patient's treating physician.Read full original descriptionShow less
Fabry Disease Registry Protocol
The Fabry Registry is an ongoing, international multi-center, strictly observational program that tracks the routine clinical outcomes for patients with Fabry disease, irrespective of treatment status. No experimental intervention is involved; patients in the Registry undergo clinical assessments and receive care as determined by the patient's treating physician.
The primary objectives of the Registry are:
* To enhance the understanding of the variability, progression, and natural history of Fabry disease, including heterozygous females with the disease; * To assist the Fabry medical community with the development of recommendations for monitoring patients and reports on patient outcomes to help optimize patient care; * To characterize and describe the Fabry population as a whole; * To evaluate the long-term safety and effectiveness of Fabrazyme®
Fabry Pregnancy Sub-registry: This Sub-registry is a multicenter, international, longitudinal, observational, and voluntary program designed to track pregnancy outcomes for any pregnant woman enrolled in the Fabry Registry, regardless of whether she is receiving disease-specific therapy (such as enzyme replacement therapy with agalsidase beta) and irrespective of the commercial product with which she may be treated. Data from the Sub-registry are also used to fulfill various global regulatory requirements, to support product development/reimbursement, and for other research and non-research-related purposes. No experimental intervention is given; thus a patient will undergo clinical assessments and receive standard of care treatment as determined by the patient's physician. If a patient consents to this Sub-registry, information about the patient's medical and obstetric history, pregnancy, and birth will be collected, and, if a patient consents to data collection for her infant, data on infant growth through month 36 postpartum will be collected.
Inclusion: Fabry Registry: All patients with a confirmed diagnosis of Fabry disease who have signed the informed consent and patient authorization form(s) are eligible for inclusion. Confirmed diagnosis is defined as a documented deficiency in plasma or leukocyte αGAL (alpha-galactosidase) enzyme activity and/or mutation(s) in the gene coding for αGAL; Fabry Pregnancy Sub-registry:; Eligible women must:; be enrolled in the Fabry Registry; be pregnant, or have been pregnant with appropriate medical documentation available; provide a signed informed consent and authorization form(s) to participate in the Sub-Registry prior to any Sub-Registry-related data collection being performed.