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Shwachman-Diamond Syndrome Global Patient Survey and Partnering Platform
NCT06999954 · View on ClinicalTrials.gov ↗
Study Summary
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.
Conditions Studied
Study Locations (1)
Massachusetts
- Shwachman-Diamond Syndrome Alliance Inc. — Woburn
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 8,000 participants |
| Start Date | 2024-02-07 |
| Est. Completion | 2088-12 |
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Full Details on ClinicalTrials.gov ↗What the Registry Record Tells You About NCT06999954
The ClinicalTrials.gov registry entry for NCT06999954 describes a study currently listed as recruiting. It is categorized as an unspecified phase, which is the standard way researchers label where a study sits along the investigational pathway from early safety work through later efficacy and post-marketing evaluation. The registered enrollment target is 8,000 participants, a figure that helps gauge the scale of data the investigators plan to collect. The listed sponsor is Shwachman-Diamond Syndrome Alliance, which has 1 total studies on file at ClinicalTrials.gov, and sponsors are the parties responsible for study design, oversight, and regulatory filings.
The record links to 10 conditions, with Exocrine Pancreatic Insufficiency appearing as the primary indexed condition, and to 0 interventions. Interventions can include drugs, devices, procedures, behavioral programs, or observational arms, and each is tracked as a separate registry field so that downstream queries can filter accurately. When a trial lists multiple interventions, it usually reflects a multi-arm design or a comparison protocol rather than a single treatment being tested in isolation. The brief summary published in the registry is the clearest source of protocol intent and should be read before drawing conclusions from any sidebar tags.
Geographic footprint matters for practical reasons: NCT06999954 reports 1 study location spanning 1 distinct geographic area — top geographies include Massachusetts. A larger site network tends to correlate with broader recruitment capacity, but it does not imply anything about study quality, and site-level enrollment status can diverge from the overall registry status shown above. Every data point on this page comes from the public ClinicalTrials.gov dataset and is reproduced here for reference only; it is not a medical recommendation, an endorsement of the sponsor, or an invitation to enroll. Verify current status, eligibility criteria, and contact details directly at ClinicalTrials.gov, and discuss any participation decision with your own healthcare provider.
Frequently Asked Questions
What is clinical trial NCT06999954 about?
NCT06999954 is a clinical study titled "Shwachman-Diamond Syndrome Global Patient Survey and Partnering Platform". 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 SD...
What is the current status of trial NCT06999954?
This trial is currently recruiting. The enrollment target is 8,000 participants. The study started on 2024-02-07. Estimated completion is 2088-12.
What conditions does trial NCT06999954 study?
This clinical trial studies the following conditions: Exocrine Pancreatic Insufficiency, Shwachman-Diamond Syndrome, Congenital Neutropenia, SDS, IBMF. These conditions were identified from the trial registry and reflect the primary focus areas of the research.
Who is sponsoring clinical trial NCT06999954?
This trial is sponsored by Shwachman-Diamond Syndrome Alliance, which has 1 total clinical trials registered on ClinicalTrials.gov. The sponsor is responsible for the study's design, funding, and regulatory compliance.
Where is trial NCT06999954 being conducted?
This trial has 1 study location across Massachusetts. Contact the study sites directly through ClinicalTrials.gov for enrollment availability.
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