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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 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.

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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.

Study Locations (1)

Massachusetts

  • Shwachman-Diamond Syndrome Alliance Inc. - Woburn

Trial Details

FieldValue
Enrollment Target 8,000 participants
Start Date 2024-02-07
Est. Completion 2088-12

What the Registry Record Tells You About NCT06999954

The ClinicalTrials.gov registry entry for NCT06999954 describes a study currently listed as recruiting, categorized as an unspecified phase. The registered enrollment target is 8,000 participants, a figure that helps gauge the scale of data the investigators plan to collect, above the 83-participant average among 7 other Exocrine Pancreatic Insufficiency trials with a reported enrollment target (9539% higher). The listed sponsor is Shwachman-Diamond Syndrome Alliance, which has 1 total studies on file at ClinicalTrials.gov.

The record links to 10 conditions, with Exocrine Pancreatic Insufficiency appearing as the primary indexed condition, and to 0 interventions.

NCT06999954 reports 1 study location spanning 1 distinct geographic area - top geographies include 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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Data sourced from official public datasets. See our methodology for details. Retrieved and formatted by PlainTrial Editorial

Every figure on PlainTrial is rendered directly from the ClinicalTrials.gov registry, no number is typed in by an editor. This page mirrors this trial's own ClinicalTrials.gov registry record, live from the dataset. See our editorial standards & corrections policy, the methodology behind these numbers, or report a data error.