Shwachman-Diamond Syndrome Global Patient Survey and Partnering Platform
Recruiting
Observational Study
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
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Sex
- Any
- Study type
- Observational
- Participants needed
- 8,000 (estimated)
- Sponsor
- Shwachman-Diamond Syndrome Alliance Inc · Other
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About This Trial
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 cure…
Trial Locations
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Eligibility Criteria
Inclusion Criteria:
The Program invites patients of all ages who have a confirmed diagnosis of the below, using established diagnostic guidelines, plus their parents/caregivers.
* Patients with a confirmed Shwachman-Diamond Syndrome (SDS) diagnosis, including a genetic or clinical diagnosis. The i…
Contacts