About this trial
This study looks at families with Inherited Bone Marrow Failure Syndromes (IBMFS). It aims to learn about cancer rates and types in these families. The focus is on understanding how genetic factors may lead to cancer in people with these conditions. Families with members who have IBMFS are ideal for cancer screening and prevention efforts.
This is an observational study (not a drug trial) with ID number NCT00027274. It hopes to enroll around 4,000 participants. The study is not FDA regulated for drugs or devices.
Who can join
Anyone from birth to 100 years old can participate, including both men and women. This study is open to families with a member affected by an IBMFS, such as Fanconi Anemia or Diamond-Blackfan Anemia. Healthy volunteers and family members of affected individuals can also join. The trial team will check eligibility for each participant.
Conditions
Diamond Blackfan Anemia, Dyskeratosis Congenita, Fanconi Anemia, Shwachman Diamond Syndrome, Inherited Bone Marrow Failure Syndrome, Aplastic Anemia
The study team makes the final call on eligibility.
What happens in the study
Participants will be part of a group that includes all families with someone affected by an IBMFS. They will complete questionnaires, undergo clinical evaluations, and have tests done to monitor health. The study looks at how patients with IBMFS compare to healthy individuals, focusing on cancer risk and related factors.
Where
This trial is running at 2 locations in the United States. All of them are currently recruiting.
National Cancer Institute - Shady Grove
Rockville, Maryland
National Institutes of Health Clinical Center
Bethesda, Maryland