SDS Patient LENS Study
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.
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 program priorities for years to come.
To participate, please join SDS-GPS first, fill out all required surveys, and then select the PFDD survey on your dashboard. The PFDD survey will be launched by early February. You will be able to indicate your interest in the LENS study in the PFDD survey, and go through the informed consent process. After that, you will be able to schedule your interview at a time that is convenient for you.
Topics include
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Patient experience navigating the healthcare system
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Social and economic impact of an SDS diagnosis
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Research questions important to the SDS community
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Perspectives on current treatment options
With the goal
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Describing the SDS diagnostic odyssey and patient journey
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Raising awareness of the SDS patient experience
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Contributing to future research and advocacy efforts
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Contributing to patient care and therapy development
Video Presentation about the LENS study
We presented an overview of the LENS study at the latest SDS POPS. Watch it here.
Frequently Asked Questions
Who is eligible?
Individuals affected with SDS (18 years or older) and/or caregivers to those with SDS.
How many people would you like to interview?
10-16 participants (or more – the more the better)
How will interviews be performed?
Interviews will be conducted using a phone or video call and involve guiding questions and space to share personal experiences.
How will my interview data be used and protected?
Common themes will be identified across interviews, and this data will be used to guide future research, care, and advocacy initiatives, including preparations for the SDS EL-PFDD meeting. All personal information and identifiers will be removed before analyzing and sharing data.
Where can I access the informed consent form and written details?
The IRB-approved study overview and consent form are available for pre-viewing by clicking here.
To participate in the study, please sign the form on the SDS-GPS platform, when presented to you after completing the PFDD survey. It is the same information as linked above.