Actively Recruiting
Shwachman-Diamond Syndrome Global Patient Survey and Partnering Platform
Led by Shwachman-Diamond Syndrome Alliance Inc · Updated on 2025-05-31
8000
Participants Needed
1
Research Sites
3382 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
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
Official Title
Shwachman-Diamond Syndrome Global Patient Survey and Partnering Platform
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Patients of any age with a confirmed diagnosis of Shwachman-Diamond Syndrome (genetic or clinical diagnosis).
- Patients with confirmed SDS-like syndromes caused by mutations such as DNAJC21 or SRP54.
- Patients with other inherited blood disorders like RUNX1-FPD, Fanconi Anemia, or congenital neutropenias like ELANE neutropenia.
- Parents, caregivers, and close relatives of patients, including those of deceased patients.
You will not qualify if you...
- Individuals who do not meet the inclusion criteria listed above.
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
Shwachman-Diamond Syndrome Alliance Inc.
Woburn, Massachusetts, United States, 01888
Actively Recruiting
Research Team
E
Eszter Hars, Ph.D.
CONTACT
S
SDS-GPS Program Team
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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