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July 5th, 2021
The SAMPI project is funded by the Temple Street Foundation to “Give a voice to the children and their families with Rare Diseases through Sand Play, Art, Music, Photovoice, Interviews and Survey. They are launching a Qualtrics web-based survey, and MDI are encouraging our members to participate in this survey. For more details see below.
Researchers from the University College Dublin and Children’s Health Ireland at Temple Street are conducting a research project called the SAMPI. This project funded by Temple Street Foundation to “Give a voice to the children and their families with Rare Diseases through Sand Play, Art, Music, Photovoice, Interviews and Survey”.
As part of the inputs required for the project, we are launching a survey focused on measuring the Parental Needs Scale for Rare Diseases in Ireland. We are inviting eligible participants to take part in the survey. An information flyer is attached to provide you with a brief overview of the study, research team members, and an online survey link.
You can contact the Principal Investigator of the project, Dr Suja Somanadhan, via email at firstname.lastname@example.org, for more information about the project or if your child is aged between 4-16 years of age and would like to participate in any modalities of the project such as Sand Play, Music, Arts and Interviews.