OHDSI Rare Disease Working Group Interest Survey

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OHDSI Rare Disease Working Group Interest Survey

The goal of the OHDSI Rare Disease Working Group is to advance the understanding and treatment of rare diseases by leveraging real-world data, uniting multidisciplinary experts, and developing innovative methodologies to improve patient outcomes and inform clinical decision-making.

Thank you for your interest. Your input will help us shape a productive and collaborative community. This survey should take about 2-3 minutes to complete.

Please indicate your primary affiliation (choose one):

Academic/Research

Pharmaceutical/Biotech

Technology/Software

Consulting/CRO

Healthcare Provider

Patient Advocacy Group

Other:

Clear selection

What expertise, skills, or data assets can you contribute to the working group? (Chose one option that fits best)

Clinical and Real-world data (RWD)

Rare disease research

Data standardization

Patient engagement/advocacy

Statistics, Analytics, AI/ML applications in healthcare

Clinical trial design and Pharmacoepidemiology

Regulatory science

Other:

Clear selection

What would you like to achieve by joining this working group? (Select all that apply)

Collaborate on rare disease research

Access to shared datasets/tools

Develop methodologies for RWD analysis

Network with experts in rare diseases

Contribute to patient-centered outcomes

Other:

Which rare diseases are you most interested in? (e.g., cystic fibrosis, ALS, Huntington’s disease, etc.)

In your view, what are the key criteria that would define the success of this working group?

Publications

Framwrok/tools

Data/Evidence sharing

Translational impact

Rare disease cohort identification

Other:

Do you have any suggestions to make this working group successful?

Name (optional)

Organization (optional)

Email (optional)

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