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ABOUT THE SDS REGISTRY

Mission

Mission

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 SDS and SDS-like conditions. The ultimate goal is to cure SDS. 

Join the Registry

If you are interested in enrolling yourself and/or your child in the SDSR, please fill out this form so we can contact you or click here to contact us directly.

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Centers
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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.

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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, Boston Children's Hospital

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, BSN, BMTCN

Research Nurse III and BMT Research Team Lead, Cincinnati Children's Hospital Medical Center

Sara has been a Bone Marrow Transplant nurse for over 25 years and has been with the SDS Registry at CCHMC since 2012. Sara loves continuing to learn about SDS and helping the patients and families affected by this condition.

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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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Jane Koo, MD

Pediatric Hematologist/Oncologist, Cincinnati Children's Hospital Medical Center

Dr. Koo is a pediatric bone marrow transplant specialist at Cincinnati Children's Hospital Medical Center. She joined the SDS Registry team in 2022. Dr. Koo concentrates her clinical care and research efforts on patients with SDS and other bone marrow failure disorders in addition to acute and late complications following bone marrow transplant. 

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Helen Reed, MD, MPH

Clinical Fellow in Pediatric Hematology/Oncology, Dana-Farber/Boston Children’s Cancer and Blood Disorders Center

Dr. Reed is a clinical fellow in pediatric hematology/oncology at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center and has a background in cancer epidemiology. She began working with Dr. Shimamura and the SDS Registry team in 2022. Her research is focused on the clinical outcomes and cancer risk among patients with inherited bone marrow failure syndromes, including SDS.

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Karyn Brundige, MSN, CPNP

Pediatric Nurse Practitioner, Bone Marrow Failure Treatment Center, Dana-Farber/Boston Children’s Cancer and Blood Disorders Center

Karyn is a nurse practitioner with 30 years of experience caring for people with blood disorders. She first worked with Dr. Shimamura in Seattle, and was excited to join Dr. Shimamura and the Bone Marrow Failure Program at Boston Children’s Hospital in 2016. Karyn is passionate about educating nurses about bone marrow failure conditions. She enjoys connecting with patients and families, and providing education and support to promote health and participation in healthcare decisions.

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Leah Cheng, M.A., CCRP

Clinical Research Manager, Boston Children's Hospital

Leah is a Clinical Research Manager with the Clinical Research Operations Center 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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Richard Cooper

Research Coordinator II, Cincinnati Children's Hospital Medical Center

Richard graduated from University of Kentucky with a Bachelors in Public Health and enjoys interacting with families when they come in for follow-up.

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Gabby O’Connor

CRC II, Cincinnati Children's Hospital Medical Center

Gabby joined the SDS Registry in 2022.

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Ian Atkinson, BA

Clinical Research Assistant, Boston Children's Hospital

Ian is a graduate of Cornell University where he obtained a BA in Biology and Society.  As a Clinical Research Assistant, he works collaboratively with medical providers, research staff, and patients for the SDS Registry and other bone marrow failure projects.  Ian is passionate about promoting health equity, improving patient treatment/outcomes, and advancing medical knowledge through research.

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Katie Coyne, BS

Clinical Research Assistant, Boston Children's Hospital

Katie is a Clinical Research Assistant at Boston Children's Hospital. She first joined the SDS Registry team in 2022 as an intern during college. After graduating from Northeastern University with a Bachelor of Science degree in Biochemistry in 2023, she joined the team as a full-time CRA. She loves being a part of the SDS Registry research team and having the opportunity to work with patients and their families.

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Lois Schwarz, BA

Clinical Research Assistant, Boston Children's Hospital

Lois graduated from Wesleyan University having received BA degrees in both Psychology and Neuroscience & Behavior. She is passionate about and interested in pursuing a career in medicine and research. She has experience working in hematology and oncology research in adults and is excited to work with children. As a clinical research assistant she works with both the Bone Marrow Failure and Shwachman-Diamond Syndrome teams on research projects and initiatives. In her spare time, she loves to read, play basketball, and spend time with friends.

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Diana Schwarz, BA

Clinical Research Assistant, Boston Children's Hospital

Diana is a recent graduate of Wesleyan University where she received a BA in Neuroscience & Behavior and Psychology and participated as a student athlete on the field hockey team. She works as a Clinical Research Assistant on the bone marrow failure team where she facilitates patient communication with the SDS Registry and other ongoing studies. Diana is passionate about engaging in cutting-edge medical research, working alongside medical experts in the field, and striving to improve the overall well-being of individuals and families impacted by bone marrow failure.

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Ayo Zahra

Regulatory Specialist, Cincinnati Children's Hospital Medical Center

Ayo is a Regulatory Specialist working on the CCHMC SDS team. She joined the team in 2022, and is excited to help with the regulatory aspects of the registry.

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Ali O’Conner, BSN, RN, OCN 

Bone Marrow Failure Care Manager, Cincinnati Children's Hospital Medical Center

Ali has worked in bone marrow transplant from an inpatient and outpatient bedside nurse to Ali's current role as a care manager. Ali enjoys learning about SDS and assisting patients and families in learning more about SDS.

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Erica Miller, RN II, BSN, CPN

Outpatient Care Manager, Bone Marrow Failure Syndromes, Cincinnati Children's Hospital Medical Center

Erica has been an outpatient nurse Care Manager at Cincinnati Children’s working with Bone Marrow Failure syndromes since 2011. Erica has been with the SDS Registry since 2012, and enjoys caring for patients and families, and appreciates the resource that the SDS Registry continues to be.

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Felicia Andresen, MD

Postdoctoral Research Fellow, Shimamura Laboratory, Department of Hematology/Oncology,
Boston Children’s Hospital

Dr. Andresen joined the laboratory of Dr. Shimamura as a postdoctoral fellow in 2022. Before that, she worked as a pediatrician in the Department of Pediatric Hematology and Oncology at the University Medical Center Freiburg, Germany. During this time, Dr. Andresen's work centered around leukemia predisposition syndromes and pediatric myelodysplastic syndromes. Currently, her research is focused on deciphering the role of clonal hematopoiesis in inherited bone marrow failure syndromes.

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Chad Harris, BS, MS

Lab Manager, Shimamura Laboratory, Department of Hematology/Oncology,
Boston Children’s Hospital

Chad received his BS then MS in Biology/Genetics and Molecular Biology respectively from Ball State University. He is currently the chair of the Laboratory Safety Group (LSG) of the hospital, and is a member of the Institutional Biosafety Committee as well as the Gene and cell therapy scientific review committee. 

Team

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 and stem cell transplanter

at Cohen Children’s Medical Center in New Hyde Park, NY. Her clinical and research interests

include acquired and inherited bone marrow failure syndromes. She is the founder and director

of the Diamond Blackfan Anemia Registry (DBAR).

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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.

Advisory Board

SDS Registry Team Alumni

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Greta Joos, BS

Clinical Research Assistant, Boston Children's Hospital

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.

Registry Participation

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