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Publications and Diagnostic & Treatment Guidelines

Key Publications
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Draft consensus guidelines for diagnosis and treatment of Shwachman-Diamond syndrome. 

Dror Y, Donadieu J, Koglmeier J, et al.

Ann N Y Acad Sci. 2011;1242:40–55. doi:10.1111/j.1749-6632.2011.06349.x

The purpose of this document is to provide guidelines for diagnosis, evaluation of organ and system abnormalities, and treatment of hematologic, pancreatic, dietary, dental, skeletal, and neurodevelopmental complications. New recommendations regarding diagnosis and management arepresented, reflecting advances in understanding the genetic basis and clinical manifestations of the disease based onthe consensus of experienced clinicians from Canada, Europe, and the United States.

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Shwachman-Diamond Syndrome

Adam Nelson, MBBS and Kasiani Myers, MD.

https://www.ncbi.nlm.nih.gov/books/NBK1756/

GeneReviews [ http://www.genereviews.org], an international point-of-care resource for busy clinicians, provides clinically relevant and medically actionable information for inherited conditions in a standardized journal-style format, covering diagnosis, management, and genetic counseling for patients and their families. Each chapter in GeneReviews is written by one or more experts on the specific condition or disease and goes through a rigorous editing and peer review process before being published online. © 1993-2020 University of Washington

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Predisposition to myeloid malignancies in Shwachman-Diamond syndrome: biological insights and clinical advances.

Reilly CR, Shimamura A.

Blood. 2023 Mar 30;141(13):1513-1523.

doi: 10.1182/blood.2022017739.

PMID: 36542827 

Free article.

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[in French] Protocole National de Diagnostic et de Soins Maladie de Shwachman Diamond

Mars 2023
Coordination : Centre de référence Maladies Rares : Neutropénies Chroniques
Aurelia Alimi & Jean Donadieu

Available at https://www.has-sante.fr/upload/docs/application/pdf/2023-04/pnds_sds_complet.pdf

Free document

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We regret to inform you that the QUOSA's copyright-compliant platform we used will be retired in Q3 2023. While we are transitioning to a new tool, please email us at Library@SDSAlliance.org if you need assistance accessing any SDS related publications.

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Shwachman-Diamond Syndrome Alliance Inc.

Social:

Email: connect@SDSAlliance.org

Phone: +1-617-329-1838

Mail: PO Box 2441, Woburn, MA 01888

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The Shwachman-Diamond Syndrome Alliance (SDS Alliance) is a 501(c)(3) nonprofit organization dedicated to building a world where Shwachman-Diamond Syndrome (SDS) is a manageable condition and all patients and their families can thrive - through driving research and engaging in advocacy and education.

 

The SDS Alliance brings together patient families, researchers, clinicians, and other diverse stakeholders to better understand, diagnose, and treat this devastating cancer predisposition genetic disorder. The SDS Alliance was launched in 2020 by the parents of a child with SDS, who are biomedical researchers and entrepreneurs.

 

The SDS Alliance’s leadership and scientific & medical advisors are experienced clinicians and researchers focused on combining the patient-family perspective with solutions based on the best available scientific evidence.

 

Families from around the world are fundamental to accelerating the SDS Alliance’s mission to improve outcomes for all SDS patients, especially populations from diverse backgrounds who don’t have possible stem-cell donor matches. The SDS Alliance intentionally elevates the voices of individuals from diverse backgrounds, the LGBTQ+ community, people with disabilities, and marginalized groups, as they bring critical insight and advance the SDS Alliance’s mission.

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