In this issue: SDS Alliance opens a new qualitative research study - the SDS Patient LENS Study - to understand the unique lived experiences, needs, and stories of individuals with SDS (Shwachman-Diamond Syndrome) and their caregivers.
This is the latest issue of the SDS Alliance Blog! Welcome to timely updates on all things SDS, Science, and Advocacy. We bring you a digest of recent scientific publications, conferences, and other newsworthy content - all relevant to SDS - with links to more details and learning opportunities. Are you interested in anything specific? Did we miss something? Let us know. Email connect@SDSAlliance.org or message us on Facebook! This is all for you!
The purpose of this study is to capture valuable insights into the SDS diagnostic odyssey, the patient journey, experiences with current treatments, and unmet needs of Shwachman-Diamond Syndrome patients.
By participating, you will help capture and communicate the SDS patient experience, contribute to developing clinical care recommendations, and accelerate therapy development. It will also help us prepare for the EL-PFDD meeting for SDS with the FDA, researchers, and other stakeholders. As a participant, you would be asked to take part in a telephone or video interview, which will last approximately 45 to 60 minutes. The interview will be conducted by a trained member of our research team. The study is completely voluntary, and your involvement will have no impact on your participation in other research efforts, initiatives, or your access to care.
We are specifically looking for individuals who have been diagnosed with SDS and/or individuals who are caregivers (or guardians) for someone with SDS. To participate, you must be at least 18 years old and comfortable sharing your experience in English. The interview will cover a variety of topics, including healthcare and treatment experiences, barriers to care, and other aspects of your needs and experiences. All personal information and identifiers will be removed before analyzing and sharing data.
This is an IRB approved qualitative research study conducted in collaboration with MGH.
We have first introduced this project at SDS POPS 2024. Check out the presentation here:
Your input will be invaluable in helping us better understand the needs of the SDS community and ensure that future clinical care and research are more informed and effective.
How can I participate in the SDS Patient LENS Study?
If you are interested in participating, please log in to your SDS-GPS account and apply by completing and submitting the SDS Patient LENS Study informed consent form. You can find it on your SDS-GPS dashboard and under open surveys. The SDS Patient LENS team will review all applications and select approximately 10-15 participants to be interviewed to ensure a wide and representative range of experiences with SDS will be captured. If you are selected, a member of the team will contact you to schedule your interview. Please note that submitting an application does not guarantee selection.
If you don’t have an SDS-GPS account yet, please visit the SDS-GPS information page at www.sdsalliance.org/sds-gps.
What is the timeline for the SDS Patient LENS Study?
Application are now open! Apply by February 16, 2025.
Participants will be selected soon after.
Interviews will be scheduled starting in early February through early March.
The interviews will be de-identified and analyzed in March and April.
Early analysis results will help inform the SDS PFDD meeting on June 4th, 2025, the resulting Voice of the Patient Report, and scientific meetings and publications thereafter.
Where can I learn more about the SDS Patient LENS Study?
We created a website for the LENS study (www.sdalliance.org/lens) with more details and relevant resources. If you have any questions about the study, please don’t hesitate to contact us at lens@sdsalliance.org.
Thank you for considering this opportunity to make a meaningful contribution to the SDS community.
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