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Nyilvántartások

child on mother's lab receiving blood work to participate in research clinical trial
A regiszterek jelentik a kutatás és a terápiafejlesztés ALAPJÁT.

 

KRITIKUS fontosságúak bármely ritka betegség előrehaladása szempontjából – beleértve a Shwachman-Diamond szindrómát (SDS). 

​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)
Nyilvántartások, amelyek jelenleg elfogadnak új SDS-betegeket 

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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