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 513 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 is an international registry collecting information from people with Gaucher disease, a rare inherited condition. It also has a sub-registry that gathers information about pregnancies in people enrolled in the main registry. The sponsor is Genzyme, a Sanofi company.
Who can take part
- A confirmed diagnosis of Gaucher disease, shown by a documented lack of the beta-glucocerebrosidase enzyme and/or a change (mutation) in the beta-glucocerebrosidase gene.
- Permission (patient authorisation) for your data to be used.
- For the pregnancy sub-registry: you must already be in the main registry.
- For the pregnancy sub-registry: you are pregnant, or have been pregnant, with medical records available.
- For the pregnancy sub-registry: you sign a consent and permission form before any data is collected.
Who may not be able to
- Not stated — ask the trial team. There are no exclusion criteria listed for the registry or sub-registry.
What taking part involves
- • This is an observational registry, so it collects information rather than giving a treatment. Not stated — ask the trial team for details on what data is collected.
Time commitment: Not stated — ask the trial team about visits, how long it lasts, and what taking part involves.
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
- 12,000
- Started
- 1991-04-01
- Last checked
- 2026-04
Plain English Summary
What is this study?
- • Testing a new treatment for gaucher disease
- • Clinical study - 12,000 participants
- • The ICGG Gaucher Registry is an ongoing, international multi-center, strictly observational program that tracks the routine clinical outcomes for patients with Gaucher disease, irrespective of treatment status
Who can take part?
- • Adults
- • Diagnosed with gaucher disease
Where?
- • Cambridge - Investigational Site Number : 151340
- • Birmingham - Investigational Site Number : 152287
- • Birmingham - Investigational Site Number : 154240
- • London - Investigational Site Number : 151123
- • +4 more UK sites
This is a simplified summary. Always discuss with your doctor before making any decisions.
About This Trial
The ICGG Gaucher Registry is an ongoing, international multi-center, strictly observational program that tracks the routine clinical outcomes for patients with Gaucher 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 objectives of the Registry are: * To enhance understanding of the variability, progression, identification, and natural history of Gaucher disease, with the ultimate goal of better guiding and assessing therapeutic intervention. * To assist the Gaucher medical community with the development of recommendations for monitoring patients, and to provide reports on patient outcomes, to optimize patient care. * To characterize the Gaucher disease population. * To evaluate the long-term effectiveness of imiglucerase and of eliglustat. Gaucher Pregnancy Sub-registry: The primary objective of this Sub-registry is to track pregnancy outcomes, including complications and infant growth, in all women with Gaucher disease during pregnancy, regardless of whether they receive disease-specific therapy. 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
- ✓ICGG Gaucher Registry
- ✓For all patients, appropriate patient authorization will be obtained.
- ✓Gaucher Pregnancy Sub-registry:
- ✓be enrolled in the ICGG Gaucher Registry.
- ✓be pregnant, or have been pregnant with appropriate medical documentation available.
Who cannot take part
- ✗\- No exclusion criteria for participation in the ICGG Gaucher Registry and Sub-registry.
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 : 154240
Birmingham B4 6NH, 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 : 150455
Manchester M13 9WL, United Kingdom
How to Get in Touch
Trial Transparency email recommended (Toll free number for US & Canada)
Sponsor contactCONTACT
ICGG Gaucher Registry HelpLine
Sponsor contactCONTACT