Shwachman-Diamond Syndrome Global Patient Survey and Partnering Platform
Public ClinicalTrials.gov record NCT06999954. Field values are reproduced from the official study page; the official ClinicalTrials.gov record remains the source of truth for eligibility, enrollment, and contact information.
Data is sourced from official ClinicalTrials.gov public API records. Always review the official ClinicalTrials.gov record for the latest information.
Official title
The Shwachman-Diamond Syndrome Global Patient Survey and Partnering Platform Program (SDS-GPS Program)
Study identification
- NCT ID
- NCT06999954
- Recruitment status
- Recruiting
- Study type
- Observational
- Phase
- Not listed
- Lead sponsor
- Shwachman-Diamond Syndrome Alliance Inc
- Other
- Enrollment
- 8,000 participants
Conditions and interventions
Conditions
- Cognitive Delay, Mild
- Congenital Neutropenia
- DNAJC21 Gene Mutation
- EFL1 Gene Mutation
- ELANE
- Exocrine Pancreatic Insufficiency
- Heme Malignancy
- IBMF
- Immune Deficiency
- Inherited BMF Syndrome
- Inherited Bone Marrow Failure
- Inherited Cancer Syndrome
- Inherited Cancer-Predisposing Syndrome
- Inherited Immunodeficiency Diseases
- Myelodysplastic Syndromes
- Neutropenia Chronic Benign
- Neutropenia Other
- Neutropenia, Severe Chronic
- Pancytopenia
- Ribosome Alteration
- Ribosomopathy
- SBDS Gene Mutation
- SDS
- SRP54 Gene Mutation
- Shwachman Syndrome
- Shwachman-Diamond Syndrome
- WHIM
Interventions
Not listed
Eligibility (public fields only)
- Age range
- Not listed
- Sex
- All
- Healthy volunteers
- Not listed
This page does not interpret eligibility. Detailed inclusion and exclusion criteria are on the official ClinicalTrials.gov record.
Study timeline
- Start date
- Feb 6, 2024
- Primary completion
- Nov 30, 2088
- Completion
- Nov 30, 2088
- Last update posted
- May 30, 2025
2024 – 2088
United States locations
- U.S. sites
- 1
- U.S. states
- 1
- U.S. cities
- 1
| Facility | City | State | ZIP | Site status |
|---|---|---|---|---|
| Shwachman-Diamond Syndrome Alliance Inc. | Woburn | Massachusetts | 01888 | Recruiting |
Site contact phone numbers, emails, and investigator names are intentionally not displayed here. Open the official ClinicalTrials.gov record for site contact information.
About this trial record page
- What this page shows
- Public field values for ClinicalTrials.gov record NCT06999954, including study identification, conditions, interventions, eligibility (age, sex, healthy volunteer), timeline, and U.S. site list.
- What this page does not do
- No medical advice, eligibility judgments, treatment recommendations, study quality scoring, or AI-generated medical summaries. No site contact phone numbers, emails, or investigator names.
- Where the data comes from
- Sourced from the official ClinicalTrials.gov public API. The official record is the source of truth.
- Last refresh
- Last update posted May 30, 2025 · Synced Apr 20, 2026
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Open the official record
The complete protocol, eligibility criteria, and contact information for NCT06999954 live on ClinicalTrials.gov.