Registry for patients with achondroplasia and hypochondroplasia
Local Registry for Data Collection of Patients With Achondroplasia / Hypochondroplasia for Epidemiological, Care and Research Studies
This study is collecting health information from people with achondroplasia and hypochondroplasia to help understand these conditions better and improve future treatments.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 200 (estimated) |
| Sex | All |
| Sponsor | Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico Academic / other |
| Locations | 1 site (Milan) |
| Trial ID | NCT05328050 on ClinicalTrials.gov |
What this trial studies
This observational registry collects clinical data from patients diagnosed with achondroplasia and hypochondroplasia. The aim is to gather comprehensive information that can help in understanding these conditions better. By documenting patient experiences and clinical outcomes, the registry seeks to support future research and treatment approaches. Participation involves providing informed consent and sharing relevant health information.
Who should consider this trial
Good fit: Ideal candidates are individuals with a confirmed diagnosis of achondroplasia or hypochondroplasia who can provide informed consent.
Not a fit: Patients without a diagnosis of achondroplasia or hypochondroplasia will not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could enhance understanding and management of achondroplasia and hypochondroplasia, leading to improved patient care.
How similar studies have performed: While observational registries are common, the specific focus on achondroplasia and hypochondroplasia may provide novel insights, although similar approaches have shown success in other conditions.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Confirmed diagnosis of achondroplasia/hypochondroplasia * Patients (and/or Parents legal guardian when required) able to provide informed consent Exclusion Criteria: * Absence of diagnosis of achondroplasia/hypochondroplasia * Patients (and/or Parents legal guardian when required) not able to provide informed consent
Where this trial is running
Milan
- Medical Genetics Unit, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico Milan — Milan, Italy (Recruiting)
Study contacts
- Study coordinator: Maria Francesca Bedeschi, MD
- Email: mariafrancesca.bedeschi@policlinico.mi.it
- Phone: +390255032150
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.