Rare Disease Trial, Recruiting
Who may be able to join
AI generated eligibility summary. Written by an AI model from the official source data and checked on a sample basis. It can contain mistakes, so confirm anything important against the original source. How we use AI
Who might be able to join this trial:
- You must be between 2 and 100 years old.
- Pregnant women who have a known or suspected medical condition being studied, or who become pregnant while already participating in the trial, may be eligible.
- Pregnant women who are related to someone with the condition being studied (including spouses or partners) may be able to join for the purpose of collecting cord blood and tissue samples at the time of delivery only.
Who may not be able to join:
- Healthy volunteers who are unable to give consent to participate.
- Healthy volunteers who do not agree to have blood drawn, tissue studies performed, or samples stored for future research.
- People who have thinking or memory difficulties (such as cognitive impairment) and who are not personally affected by the condition being studied.
- People who have thinking or memory difficulties and who are not related to someone affected by the condition being studied.
- Pregnant women who are both unaffected by the condition and unrelated to anyone with the condition.
Important: Always verify eligibility with the trial site directly before applying.
Based on publicly available eligibility criteria from ClinicalTrials.gov. Verify directly with the trial site before acting. This is not medical advice.
Contact this trial
Principal Investigator: Manfred Boehm, M.D., National Heart, Lung, and Blood Institute (NHLBI)
Phone: (301) 402-9841
Contact details sourced from ClinicalTrials.gov. Verify directly with the trial site before attending.
GP referral letter
Print a one-page summary to share with your doctor.
Trial details
Where this trial is recruiting
Primary endpoints
Rapid initiation of new, disease-specific investigations to enable the collection of data and biospecimens on affected subjects, their family members and healthy controls, and to assist in the generation of diagnoses and further the understandin...
Can't join this trial?
Data last synced from ClinicalTrials.gov: 27 July 2026. Trial status can change. Always verify current status directly with the trial site before making any decision.