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Study Team
The IBMFS Research Study Team, at the Clinical Genetics Branch Picnic at Seneca Creek State Park, June 2021
Pictured above, from front left to top right
Front row from left: Stephanie Steinbart, Blanche Alter, Neelam Giri
Middle row from left: Maryam Rafati, Jessica Bayer, Lisa McReynolds, Ann Carr, Maureen Risch, Lisa Leathwood
Back row from left: Matthew Gianferante, Burak Altintas, Sharon Savage, Marena Niewisch
Dr. Giri is the principal investigator of the IBMFS program and board certified in pediatrics and pediatric hematology/oncology. She is an expert in the diagnosis and clinical aspects of all IBMFS. Dr. Giri leads collaborative studies of the clinical complications of the IBMFS, including cancer.
Dr. Savage leads the study of the telomere biology disorders, including dyskeratosis congenita within the IBMFS program.
Dr. McReynolds is a Lasker Clinical Research Scholar working with the IBMFS program since 2016. She is involved in the genomic aspects of the study both clinical and basic science research. She is board certified in pediatrics and pediatric hematology/oncology.
Matthew Gianferante, MD, MPH
Dr. Gianferante is a commissioned officer in the United States Public Health Service. He is a pediatric hematologist/oncologist and a staff clinician in the IBMFS program. Dr. Gianferante focuses on the clinical and genomics studies in Diamond Blackfan anemia in the IBMFS cohort. He is board certified in pediatrics and pediatric hematology/oncology.
Maryam Rafati, MD, PhD
Dr. Rafati is a medical geneticist working on novel IBMFS gene and variant discovery.
Dr. Rising is a Research Fellow co-leading the psychosocial study for dyskeratosis congenita and related telomere biology disorders.
Jessica Hatton, MS, CGC
Ms. Hatton is a genetic counselor. She provides genetic counseling and support to study participants and assists in coordinating genetic testing as needed.
Debbie Flamish, MA
Ms. Flamish is a research assistant helping with many logistical aspects of the study.
Lisa Leathwood, RN, BSN
Ms. Leathwood is the lead research nurse and study manager for the IBMFS Research Study. She has worked with the study since 2001 and serves as a liaison between the study investigators and study participants, collaborating physicians, and laboratories. She is also responsible for overseeing and coordinating data collection for the study.
Dr. Alter was the founder of the NCI IBMFS Research Study and is now retired from NCI. She is board certified in pediatrics and pediatric hematology/oncology. She has been studying bone marrow failure syndromes for more than three decades.