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.