International Collaborative Gaucher Group (ICGG) Gaucher Disease Registry & Pregnancy Sub-registry (NCT00358943)
Gaucher Disease Registry Protocol
🩺 Plain-English Summary (8th-Grade Level)
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.
Who can join: Review the eligibility criteria below.
Location: Phoenix Children's Hospital- Site Number : 840003 — Phoenix, Arizona
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria ↗
📍 All Participating Trial Locations (318 Sites)
Showing the first 25 of 318 sites.
- Phoenix Children's Hospital- Site Number : 840003 — Phoenix, Arizona
- University of Arizona- Site Number : 840015 — Tucson, Arizona
- Arkansas Children's Hospital- Site Number : 840109 — Little Rock, Arkansas
- University of Arkansas for Medical Sciences- Site Number : 840113 — Little Rock, Arkansas
- Tower Hematology Oncology Medical Group- Site Number : 840056 — Beverly Hills, California
- University of California at Irvine- Site Number : 840036 — Irvine, California
- Southern California Permanente Medical Group- Site Number : 840108 — Los Angeles, California
- USC Health Sciences Center Dept of Genetics- Site Number : 840082 — Los Angeles, California
- Children's Hospital of Orange County- Site Number : 840074 — Orange, California
- UC Davis MIND Institute- Site Number : 840010 — Sacramento, California
- Kaiser Permanente Sacramento Medical Center- Site Number : 840042 — Sacramento, California
- University of California at San Diego- Site Number : 840007 — San Diego, California
- University of California San Francisco - Parnassus Campus- Site Number : 840051 — San Francisco, California
- Stanford University Medical Center- Site Number : 840022 — Stanford, California
- Yale University School of Medicine- Site Number : 840047 — New Haven, Connecticut
- Children's National Medical Center - Washington- Site Number : 840067 — Washington D.C., District of Columbia
- Investigational Site Number : 250012 — Washington D.C., District of Columbia
- University Hematology Oncology- Site Number : 840075 — Coral Springs, Florida
- University of Florida Pediatrics Genetics- Site Number : 840121 — Jacksonville, Florida
- The Atwal Clinic- Site Number : 840112 — Jacksonville, Florida
- University Of Miami SOM- Site Number : 840006 — Miami, Florida
- University of Florida-Genetics- Site Number : 840096 — Tampa, Florida
- Pediatric Endocrine Associates- Site Number : 840017 — Tampa, Florida
- Emory University School of Medicine- Human Genetics- Site Number : 840060 — Decatur, Georgia
- University of Colorado at Denver Genetics- Site Number : 840068 — Aurora, Illinois
📞 Contact the Study Coordinator
Phone: (800) 633-1610
Email: contact-us@sanofi.com
Coordinator details come directly from the registered NIH protocol. Confirm the study is still recruiting before traveling.
💰 Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA § 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.
More studies in Gaucher Disease
- A Clinical Trial of PR001 (LY3884961) in Patients With Peripheral Manifestations of Gaucher Disease (PROCEED) — Durham, North Carolina
- Long Term Follow-Up for Safety of AVR-RD-02 — Iowa City, Iowa
- A Long-term Follow-up Study of Gaucher Disease — Durham, North Carolina
- Gaucher Disease Outcome Survey (GOS) — Lexington, Massachusetts
- Extracellular Vesicles as Potential Biomarkers and Therapeutic Target in Gaucher Disease — Minneapolis, Minnesota
Explore by condition: All Gaucher Disease clinical trials
💡 How to Participate
- Check the checklist above to see if you may qualify.
- Contact the study coordinator using the phone/email above.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.