Registry for Osteogenesis Imperfecta

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This registry collects and analyzes data from patients with Osteogenesis Imperfecta to better understand the disease's natural history and genetic factors. It utilizes a web-based platform called GeDI to integrate personal, clinical, genetic, and genealogical information in a structured manner. The aim is to simplify data collection and improve the management of patients while facilitating research into the disease's pathophysiology. By correlating genotype and phenotype, the registry seeks to enhance diagnostic processes and treatment strategies.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* All Osteogenesis Imperfecta patients, including prenatal and fetal diagnosis of Osteogenesis Imperfecta

Exclusion Criteria:

* Any condition unrelated to Osteogenesis Imperfecta

Where it's running

• Irccs Istituto Ortopedico Rizzoli
  Bologna, Emilia-Romagna, Italy Recruiting

Study contacts

• Principal investigator: Luca Sangiorgi, PhD — Istituto Ortopedico Rizzoli
• Study coordinator: Marina Mordenti, PhD
• Email: registri.malattierare@ior.it
• Phone: +39 05 6366062

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Using REMS ultrasound to check bone density in children and teens with conditions that lower bone strength

  This project will test whether REMS, a radiation-free ultrasound method, can measure bone mineral density in children and adolescents aged 5–18 who have conditions that weaken their bones.

  Recruiting Meyer Children's Hospital IRCCS · Florence, Tuscany · NCT07412782

• Pediatric safety follow-up after romosozumab treatment for osteogenesis imperfecta

  This follow-up tests the safety of romosozumab in children and adolescents with osteogenesis imperfecta who previously received romosozumab in an earlier trial.

  Recruiting at 4 sites Phase 3 Amgen · Indianapolis, Indiana and 3 other locations · NCT07366086

• Heart structure and function in children and adults with Osteogenesis Imperfecta

  This project will follow children and adults with Osteogenesis Imperfecta to see how their heart structure and function change over a five-year period.

  Recruiting Istituto Ortopedico Rizzoli · Bologna, Emilia-Romagna · NCT07287241

• Adapted physical activity program for children and teenagers with Osteogenesis Imperfecta

  This study tests if a special 6-month exercise program can help children and teenagers with Osteogenesis Imperfecta improve their energy levels and overall fitness.

  Recruiting University Hospital, Toulouse · Montpellier and 1 other locations · NCT05927389

• Evaluating hearing and balance in children and young adults with Osteogenesis Imperfecta

  This study is testing how Osteogenesis Imperfecta affects hearing and balance in kids and young adults aged 12 to 20 to better understand the condition's impact.

  Recruiting Assistance Publique - Hôpitaux de Paris · Paris · NCT05419960

• Effects of bisphosphonates on hearing loss in osteogenesis imperfecta

  This study is testing if a medication called bisphosphonates can help adults with Osteogenesis Imperfecta type I who have hearing loss.

  Recruiting Phase 4 Hospital for Special Surgery, New York · New York, New York · NCT04152551

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.