Actively Recruiting
French National Registry of Bone Marrow Failures: Prospective and Retrospective Database with Biological Sample Collection (RIME Project)
Led by Assistance Publique - Hôpitaux de Paris · Updated on 2021-03-04
5000
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Researchers are collecting detailed clinical and biological data on patients with bone marrow failure syndromes (BMF) across multiple centers in France. This observational registry gathers standardized information from diagnosis through follow-up, regardless of treatment, to better understand these rare diseases. The study aims to improve public health care by evaluating diagnosis, management, treatment outcomes, and costs, as well as advancing research into epidemiology, biology, and treatment effects of BMF. Participants receive the standard care for bone marrow failure, while biological samples like blood, bone marrow, and skin are collected during routine clinical care and stored for translational research. This setup allows researchers to analyze the disease's natural history, treatment tolerance, side effects, and quality of life impacts over time. During the study, participants undergo regular assessments including quality of life questionnaires and monitoring of disease progression and complications. Researchers track outcomes such as prevalence and distribution of BMF syndromes, clonal evolution, and treatment responses over a 10-year period. The study also evaluates extra-hematological complications and overall impact on patients' health and wellbeing.
CONDITIONS
Brief Title
French National Registry of Bone Marrow Failures
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Any age
- Diagnosis of bone marrow failure syndrome (BMF)
- Provided non-opposition or informed consent (with two parents if under 18) for biological sample collection
- Covered by health insurance
You will not qualify if you...
- Patients over 50 with myelodysplastic syndrome without genetic predisposition, family history, or medullary hypoplasia
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - Up to 10 years
Participants who undergo routine care are observed with biological sample collection as part of standard care for bone marrow failure.
Periodic visits as per routine healthcare
Trial Site Locations
Total: 1 location
1
Hématologie Greffe
Paris, France
Actively Recruiting
Research Team
R
Régis Peffault De Latour
M
Matthieu Resche-Rigon
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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