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Opportunities to Participate in Research & Clinical Trials

child on mother's lab receiving blood work to participate in research clinical trial

Registries and Natural History Studies are critical for progress in clinical care and therapy development. 

 

We encourage all patients & families to participate in all registries available to them!

​SDS Alliance has been actively pursuing efforts to

  • implement platforms and strategies to unite the existing registries and/or form collaborations

  • collect and build a large, powerful set of genomic data to drive research

  • add patient voices through a new, patient-driven, global patient survey and collaboration platform (data hub), and

  • make all data more widely available to the larger research and transnational community.

 

We are excited to announce that the program has come to live and is open for enrollment!​​

SDS-GPS: a unique patient-powered global program

gps2.png
SDS-GPS graphic with a globe connecting the dots and text The Gloabl Patient Survey and Collaboration Program (Registry)

SDS Patient LENS Study

The SDS Alliance is launching an interview-based qualitative research study to learn about and document the Lived Experiences, Needs, and Stories of the Shwachman-Diamond Syndrome patient and caregiver community.​

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The results of the study will help inform the focus areas of the EL-PFDD meeting with the FDA, the resulting Voice-of-the-patient report, and our research and programs priorities for years to come.​

Shwachman-Diamond Syndrome Patient LENS Study with a graphic of two people connecting through phone to explore the Lived Experience, Needs, and Stories of the SDS community
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