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Shwachman-Diamond Syndrome Global Patient Survey and Partnering Platform

Study acronym: SDS-GPS
StatusRecruiting
PhaseNot specified
Started
View on ClinicalTrials.gov ↗

Record History

  1. Study First Submitted
The Shwachman-Diamond Syndrome Global Patient Survey and Collaboration Program (SDS-GPS) is an opportunity for patients and their families - from anywhere in the world - to share their experience living with SDS via a safe, secure, and convenient online platform, to * expand the understanding of SDS * improve the lives of people with SDS, and * accelerate the development of new therapies and cures for SDS. By joining, participants will receive early access to relevant information about new clinical trials and other research opportunities (such as clinical registries) based on their profile, accelerating research and increasing clinical trial impact and recruitment success. The platform, consent forms, and surveys are available in five languages: English, Spanish, French, German, and Italian. More languages to come.
Trial Details
NCT Number NCT06999954
Lead Sponsor Shwachman-Diamond Syndrome Alliance Inc
Conditions
(from sponsor)		 Shwachman-Diamond Syndrome, SDS, IBMF, Congenital Neutropenia, Heme Malignancy, Shwachman Syndrome, Inherited Bone Marrow Failure, Exocrine Pancreatic Insufficiency +19 more
Related terms Congenital Bone Marrow Failure Syndromes, Exocrine Pancreatic Insufficiency, Immunologic Deficiency Syndromes, Lymphoma, Follicular, Myelodysplastic Syndromes, Neoplastic Syndromes, Hereditary, Neutropenia, severe chronic, Neutropenia, Severe Congenital, Autosomal Recessive 3, Pancytopenia, Primary Immunodeficiency Diseases, Shwachman-Diamond Syndrome
Enrollment 8,000 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov