Now Recruiting Patients With Certain Types of RASopathy Syndromes
Doctors at the National Cancer Institute (NCI) are now recruiting patient volunteers with specific RASopathy syndromes. This study will allow them to learn more about what causes RASopathies and how genetics and environmental factors contribute to cancer development in affected patients. In addition, they hope to learn how to better screen for, detect, and treat these syndromes using this data.
To Qualify, You Must Have
- A genetic diagnosis of a RASopathy syndrome with changes in RAS pathway genes
- RASopathy syndrome type: Legius, Noonan, Costello, Cardiofaciocutaneous, Capillary Arteriovenous Malformation or any other RASopathy syndromes (except Neurofibromatosis Type 1)
- Individuals with NF1 only are not eligible for the study. However, individuals with a dual diagnosis of both NF1 and another RASopathy (via genetic testing and/or clinical diagnosis) are eligible for the study.
During the Study, Participants Will
- Complete multiple health questionnaires
- Have medical records reviewed
- Have blood, urine, and saliva or cheek cell samples collected
- Have long-term follow-ups with interval outpatient visits and occasional contact by the study team via phone or mail
The NIH Clinical Center, America's Research Hospital located in Bethesda, MD.
Metro red line (Medical Center stop).
For More Information
NIH Clinical Center
Office of Patient Recruitment
800-411-1222
TTY users dial 7-1-1
Email: ccopr@nih.gov
Or go online
Refer to NIH study # 20-C-0107
Department of Health and Human Services
National Institutes of Health Clinical Center (CC)
National Cancer Institute (NCI)