At a glance
- What the study gets you
- Health checks and monitoring — no treatment given
- Type of study
- Observational (no treatment given)
- Time in hospital
- In-person visits at study sites — visit count not specified by the sponsor
- Drug or intervention
- Not specified by the sponsor
- How long the study runs
- Study runs about 390 months (dates as stated)
- About the drug or intervention
- Not specified by the sponsor
- Patient visit burden
- Not specified by the sponsor
In plain English
This registry collects health information from people with Fabry disease. It is run by Genzyme, a Sanofi company. It also includes a pregnancy sub-registry for women with Fabry disease who are pregnant or have been pregnant.
Who can take part
- You have a confirmed diagnosis of Fabry disease. This means a test showed low levels of an enzyme called alpha-galactosidase (aGAL) in your blood or white blood cells, and/or a change in the gene that makes this enzyme.
- You sign the informed consent and patient authorisation forms.
- For the pregnancy sub-registry: you are already in the Fabry Registry, you are pregnant or have been pregnant with medical records available, and you sign the sub-registry's consent and authorisation forms before any information is collected.
Who may not be able to
- None — the study lists no exclusion criteria for the Fabry Registry or the Pregnancy Sub-registry.
What taking part involves
- • Not stated — ask the trial team
Time commitment: Taking part involves signing consent forms and letting the team collect your information; how often visits happen or how long the study lasts is not stated — ask the trial team.
Plain-English summary (AI-generated) from registry data. Not eligibility advice — only the trial team can confirm whether you can take part. Use the eligibility checker to see how your health profile matches this trial.
- Type of study
- Observing health over time
- Ages
- Not specified
- Who
- All
- Number of participants
- 9,000
- Started
- 2001-07-31
- Last checked
- 2026-06
Plain English Summary
What is this study?
- • Testing a new treatment for fabry disease
- • Clinical study - 9,000 participants
- • 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
Who can take part?
- • Adults
- • Diagnosed with fabry disease
Where?
- • Cambridge - Investigational Site Number : 151340
- • Birmingham - Investigational Site Number : 152287
- • London - Investigational Site Number : 151123
- • London - Investigational Site Number : 151646
- • +4 more UK sites
This is a simplified summary. Always discuss with your doctor before making any decisions.
About This Trial
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.
How this trial compares with your answers
Answer 2 more questions to improve match
What we know so far
Still need:
- • Tell us your age for better matching
- • Tell us your sex for better matching
Preliminary match based on your answers. Full eligibility requires on-site assessment including medical history, physical exam, and lab tests. This does not guarantee enrolment.
Eligibility at a Glance
Key info
- Age: Not specified
- Who can join: All genders
What the study is looking for
- ✓Inclusion Criteria
- ✓Fabry Pregnancy Sub-registry:
- ✓Eligible women must:
- ✓be enrolled in the Fabry Registry.
- ✓be pregnant, or have been pregnant with appropriate medical documentation available.
See the full criteria
Where Is This Study? (8 UK sites)
Investigational Site Number : 151340
Cambridge CB2 2QQ, United Kingdom
Investigational Site Number : 152287
Birmingham B15 2TH, United Kingdom
Investigational Site Number : 151123
London NW3 2QG, United Kingdom
Investigational Site Number : 151646
London WC1N 3BG, United Kingdom
Investigational Site Number : 150303
London WC1N 3JH, United Kingdom
Investigational Site Number : 152361
Salford M6 8HD, United Kingdom
Investigational Site Number : 154196
Belfast BT9 7AB, United Kingdom
Investigational Site Number : 150455
Manchester M13 9wl, United Kingdom
How to Get in Touch
Trial Transparency
Sponsor contactCONTACT
Fabry Registry HelpLine
Sponsor contactCONTACT