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)
Brief summary
Reproduced verbatim from the official ClinicalTrials.gov record. Not medical advice.
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.
Study identification
- NCT ID
- NCT06999954
- Recruitment status
- Recruiting
- Study type
- Observational
- Phase
- Not listed
- Enrollment
- 8,000 participants
Conditions and interventions
Conditions
- Shwachman-Diamond Syndrome
- SDS
- IBMF
- Congenital Neutropenia
- Heme Malignancy
- Shwachman Syndrome
- Inherited Bone Marrow Failure
- Exocrine Pancreatic Insufficiency
- WHIM
- ELANE
- SBDS Gene Mutation
- EFL1 Gene Mutation
- DNAJC21 Gene Mutation
- SRP54 Gene Mutation
- Inherited Cancer Syndrome
- Inherited Cancer-Predisposing Syndrome
- Neutropenia, Severe Chronic
- Neutropenia Other
- Neutropenia Chronic Benign
- Ribosome Alteration
- Ribosomopathy
- Immune Deficiency
- Inherited BMF Syndrome
- Inherited Immunodeficiency Diseases
- Cognitive Delay, Mild
- Myelodysplastic Syndromes
- Pancytopenia
Interventions
Not listed
Eligibility (public fields only)
- Age range
- Not listed
- Sex
- All
- Healthy volunteers
- Healthy volunteers not accepted
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 Sep 4, 2026
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Open the official record
The complete protocol, eligibility criteria, and contact information for NCT06999954 live on ClinicalTrials.gov.