Rare Disease Diagnosis Journey Survey - Patient Perspectives
Surveying rare disease patient representatives online to identify factors affecting timely and accurate diagnosis. The qualitative phase aims to understand the diagnosis process, hurdles, best practices, support needs, and role of new technologies. Participants engage in a 5-day online community facilitated by an independent research institute, providing insights through various multimedia formats. Pre-registration open until September 12th.
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Presentation Transcript
Rare Barometer survey on the journey of rare disease patients to diagnosis Phase 1/2 (qualitative phase): online community in English
Survey goal: Identify personal and external factors influencing the process of obtaining timely and accurate diagnosis from a patient perspective 2
One survey with two phases 2.Quantitative phase questionnaire in 25 languages for all PLWRD 1.Qualitative phase online community in English with patient representatives 3
Goals of the qualitative phase: Understand the different steps leading to the diagnosis of a RD today Define the issues and hurdles associated with the diagnosis of a RD Identify the leverages and barriers of best practices to a faster diagnosis Map the services, tools and type of support that could help access diagnosis for RDs Identify the place and role of new technologies 4
Why an online community? To interview participants over a longer period of time To mix individual and collective data collection to understand the perceptions and needs of each patient representative / patient / carer To increase the size of the sample as online methodologies allow us to interview more respondents 5
Who can participate? 100 patient representatives 20-24 September: a 5-day online community in English facilitated by an independent research institute (OpinionWay Healthcare): A moderator asks new questions and assigns new missions every day Participants can answer questions by text or using multimedia content (pictures, audio, video ) For participants, this represents 15-20 minutes of activity each day for 5 days Pre-registration is open until 12thSeptember (link in the chat, also in the Member News) 8 complementary individual interviews. 6
