AI tool user assessment survey

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RareShare and the Rare Genomics Institute are looking into the creation of an online tool to assist users in obtaining accurate information on rare diseases using artificial intelligence (AI) resources. To help us determine how such a tool can be structured to best serve the needs of our members, we ask you to take a few minutes to complete the brief survey below. We request that you submit your responses by April 30, 2026. Your privacy is important to us; all responses will be kept confidential and used solely to improve our online resources.

Do you currently use AI resources to obtain information on rare diseases? *

Yes

What kinds of information on rare diseases are you most interested in? (Select your top three choices.) *

Challenges faced by rare disease patients and coping strategies

Clinical studies or trials

Latest scientific and medical research findings

Ways to connect with people and organizations focused on a specific disease

Find medical professionals with expertise in treating a specific condition

Identify sources for financial and social assistance.

Detailed descriptive information on a specific rare disorder

Current best treatments for a specific disease

Long term care options

Causes and preventative strategies for a specific disease

Required

How would you prefer that AI-generated information be presented to you? (Select one.) *

A rapidly generated (< 1 minute) summary report with short answers to questions.

A more detailed in-depth report that takes more time to create.

What topic areas or needs would encourage you to use a rare disease chatbot regularly? (Select your top three choices.) *

Rare disease patient stories

Scientific advances on a disease of interest

Advocacy efforts or events that expand rare disease awareness

Opportunities to participate in clinical studies

Disease research funding opportunities

Patient support and funding sources

Information on new drugs or treatment options

Counseling, family planning or patient support programs

Rare disease issues in underserved locales

Required

How interested would you be in using a RareShare/Rare Genomics Institute rare disease chatbot tool if it were to become available? *

Very interested.

Somewhat interested.

Not interested.

Do you have any other thoughts or suggestions on a rare disease chatbot that you would like to share?

Submit

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