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Shwachman-Diamond Syndrome Global Patient Survey and Partnering Platform

NCT06999954 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 8000

Last updated 2025-05-31

No results posted yet for this 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

  • 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

Sponsors & Collaborators

  • Shwachman-Diamond Syndrome Alliance Inc

    lead OTHER

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2024-02-07
Primary Completion
2088-12-31
Completion
2088-12-31

Countries

  • United States

Study Locations

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Entities

Diseases

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT06999954 on ClinicalTrials.gov