ABOUT THE SDS REGISTRY

The Shwachman-Diamond Syndrome Registry (SDSR) is dedicated to accelerating research and treatment for SDS to improve survival and quality of life for all patients with the disease. The ultimate goal is to cure SDS. 

Our Centers

Based out of Boston Children's Hospital, Dana-Farber Cancer Institute and Cincinnati Children's Hospital Medical Center, the SDSR is dedicated to sharing advances in research and clinical care with patients, families and health care professionals.

 

Meet the SDS Registry Team

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Dr. Akiko Shimamura, MD, PhD 

Director

Dr. Shimamura founded and directs the SDS Registry. She is Professor of Pediatrics at Harvard Medical School and Director of the Bone Marrow Failure and MDS Program of the Dana Farber/Boston Children's Cancer and Blood Disorders Center.  Dr. Shimamura provides clinical care and consultation for patients with SDS and other bone marrow failure conditions, and cares for patients with genetic predisposition to MDSleukemia.   She conducts clinical and laboratory research  to improve diagnosis and treatment for these conditions.

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Dr. Kasiani Myers, MD

Co-Director

Dr. Myers co-directs the SDS registry. She is an Associate Professor of Pediatrics at the University of Cincinnati and Cincinnati Children's Hospital Medical Center and Director of the Hematopoetic Stem Cell Transplant Late effects and Survivorship Program. Dr. Myers focuses her research and clinical efforts on SDS and other bone marrow failure disorders, and late effects of bone marrow transplant.

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Maggie Malsch, RN, BSN

Clinical Research Manager

Maggie is the Clinical Research Manager for the Bone Marrow Failure program at Boston Children’s Hospital. Her initial work with Dr. Shimamura was in the lab, where she worked on SDS. Maggie then went back to school to get her nursing degree from Simmons College and her Masters in Clinical Trials from Drexel University. She worked as a bone marrow transplant nurse at Boston Children’s and eventually moved into the role of research nurse and project manager. When Dr. Shimamura returned to Boston Children’s, Maggie jumped at the chance to work with her again.

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Sara Loveless, RN

Clinical Research Nurse

Sara is Clinical Research Nurse and Bone Marrow Transplant Research Team Lead at Cincinnati Children’s Hospital. Sara has worked as a BMT staff nurse at the Hospital for Sick Children in Toronto, Canada, was a charge nurse at SUNY Upstate in New York, and also worked on the Hematology/Oncology and BMT units at Cincinnati Children’s before transferring into the area of Clinical Research helping to coordinate and manage numerous registry and therapeutic trials with bone marrow failure and stem cell transplant patients. Sara enjoys her job immensely and loves the collaborative relationship with Dr. Myers, Dr. Shimamura and the entire registry staff to improve the care for all patients with SDS. 

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Christopher Reilly, MD

Adult Hematologist/Oncologist

Dr. Reilly is an adult hematologist/oncologist at the Dana-Farber Cancer Institute with expertise in inherited blood disorders and leukemia predisposition. Through a close collaboration with pediatric colleagues, we have established a clinical infrastructure to facilitate a seamless transition from pediatric to adult care for our patients. The care of SDS patients is complex, and Dr. Reilly works closely with other subspeciality physicians to provide comprehensive care for patients. In the lab, he is focused on understanding how inherited gene variants influence the development of bone marrow failure and risk of leukemia.

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Leah Cheng

Clinical Research Manager

Leah is a Clinical Research Manager with the Experimental Therapeutics and Interventional Trials group at Boston Children’s Hospital. Starting in 2017, she began working with Dr. Shimamura coordinating the SDS Registry and since then has also become involved in other bone marrow failure registries and interventional trials as well. Leah very much enjoys working with both the SDS Registry patients and the research team.

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Ashley Galvin, BS

Clinical Research Assistant

Ashley is a Clinical Research Assistant at Boston Children’s. Ashley worked as a summer intern on the SDS Registry in 2017 and 2018 while completing her Bachelor of Science degree at the University of South Carolina. After graduating, Ashley came back full-time to work on the SDSR among other hematologic and oncologic studies at Boston Children's. Please contact Ashley with updated medical records and any other registry questions!

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Anna George

Clinical Research Assistant

Anna is a Clinical Research Assistant at Boston Children's Hospital. She joined the team in November 2020 and began working with Dr. Shimamura on the SDS Registry. Since then, she has been actively involved in coordination of the SDSR as well as other bone marrow failure registries. Anna enjoys engaging with patients and families, as well as the collaborative nature of the SDSR. Please contact Anna with any registry questions!

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Greta Joos, BS

Clinical Research Assistant

Greta is a Clinical Research Assistant at Boston Children's. She joined the team in May 2021 after graduating from Duke University with a Bachelor of Science degree in Biology. She works on the SDS Registry as well as on a variety of other bone marrow failure projects. Greta enjoys connecting with patients and families. Please contact Greta with any questions about the SDSR including how to enroll, request sample collection kits, and/or share medical records.

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Kelan Queenan, BS

Clinical Research Intern | Website Designer

Kelan graduated from the University of Maryland with a Bachelor of Science degree in Neurobiology and Physiology. She is also diligently working on the SDS registry throughout her summers as a Clinical Research Intern. She helps collect, enter, and organize data for our hematological studies. She is also an experienced photographer and contributed to the design of this website.

 

Our Medical & Scientific Advisory Board

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Alison Bertuch, MD, PhD

Dr. Alison Bertuch is Director of the Bone Marrow Failure Program at Texas Children's Cancer and Hematology Centers. Her clinical interests include oncology, osteosarcoma, and bone marrow failure disorders.

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Courtney DiNardo, MD, MSCE

Dr. DiNardo is a clinical researcher with a specialized focus on prognostication and personalized therapeutics for patients with myeloid malignancies. She has completed formal training in epidemiology and biostatistics, with a Master’s of Science in Clinical Epidemiology obtained in June 2012.

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Amit Grover, MD

Dr. Grover, a gastroenterologist at Boston Children's Hospital, investigates the pathophysiology and management of pancreatic disorders in children; in particular pediatric acute, recurrent-acute and chronic pancreatitis. Current studies include longitudinal analysis of acute and long-term outcomes in children with pancreatitis, as well as proteomic analysis for the development of a novel biomarker for pancreatitis.

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Coleman Lindsley, MD, PhD

Dr. Robert Coleman Lindsley, MD, PhD, is a physician scientist at Dana-Farber Cancer Institute, specializing in research topics associated with MDS. His career has developed in conjunction with his interest in how disease evolves, and in turn, how new and existing therapies can interrupt the process of disease progression.

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Adrianna Vlachos, MD

Dr. Adrianna Vlachos is a pediatric hematologist-oncologist in New Hyde Park, New York, and is affiliated with multiple area hospitals. She has been in practice for more than 20 years. She also directs the She directs the Diamond Blackfan Anemia 

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Lauri Burroughs, MD

Dr. Lauri Burroughs is developing safer, more effective bone marrow transplant procedures for children with noncancerous blood disorders, including sickle cell disease, marrow failure disorders and inherited immune disorders. Her research has focused on developing gentler regimens of pre-transplant conditioning that prepare the body to receive the transplanted blood stem cells.

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Amy Geddis, MD

Dr. Amy E. Geddis is a pediatric hematologist-oncologist in Seattle, Washington, and is affiliated with multiple area hospitals. She has been in practice for more than 20 years.

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Sioban Keel, MD

Dr. Sioban Keel is a board certified hematologist at SCCA and a UW associate professor of Hematology and Medicine. Dr. Keel earned her MD at the University of Minnesota. Her clinical and research interests include benign red blood cell disorders, iron metabolism, acquired aplastic anemia, congenital marrow failure syndromes, neurovisceral porphyrias, hemostasis and thrombosis disorders.

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Taizo Nakano, MD

Dr. Nakano is a pediatric oncologist at Colorado Children's Hospital. His many clinical interests include general hematology, specifically inherited and acquired bone marrow failure syndromes, immune thrombocytopenia, inherited and acquired hemolytic anemias, iron metabolism, disorders of bleeding and clotting, and vascular birthmarks, malformations and tumors.