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NCT06999954 · ClinicalTrials.gov registry record
Shwachman-Diamond Syndrome Global Patient Survey and Partnering Platform
A clinical trial of Exocrine Pancreatic Insufficiency and Shwachman-Diamond Syndrome, sponsored by Shwachman-Diamond Syndrome Alliance.
- Recruiting
- Registry status
- 8,000
- Enrollment target
- 1
- Study location
NCT06999954: Recruiting study of Exocrine Pancreatic Insufficiency and Shwachman-Diamond Syndrome, sponsored by Shwachman-Diamond Syndrome Alliance.
NCT06999954 is a study of Exocrine Pancreatic Insufficiency and Shwachman-Diamond Syndrome that is actively recruiting participants, run by Shwachman-Diamond Syndrome Alliance. The registered enrollment target is 8,000 participants, above the 83-participant average among 7 other Exocrine Pancreatic Insufficiency trials with a reported enrollment target (9539% higher). The trial reports 1 study location across 1 state. According to ClinicalTrials.gov, the official US trial registry.
The verdict
NCT06999954, a study of Exocrine Pancreatic Insufficiency and Shwachman-Diamond Syndrome, is actively recruiting participants, sponsored by Shwachman-Diamond Syndrome Alliance.
- RECRUITING
- Registry status
- 8,000 participants
- Enrollment target
- 1
- Study location
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.
Primary Outcome
Patients report symptoms via surveys, grouped by organ system.
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 |
What NCT06999954 shows while recruiting
NCT06999954 is an observational study that tracks outcomes without assigning an intervention. Its 8,000 participants enrollment target places it among the larger protocols in the corpus, above the 83-participant average among 7 other Exocrine Pancreatic Insufficiency trials with a reported enrollment target (9539% higher).
The record links to 10 conditions, with Exocrine Pancreatic Insufficiency appearing as the primary indexed condition, and to 0 interventions.
NCT06999954 reports a single indexed study location in Massachusetts.
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.
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.
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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