Batten Disease Research Survey
- heathermason
- May 28, 2024
- 1 min read
In partnership with the Batten Disease Support, Research, & Advocacy Foundation, the Kennedy Krieger Institute are leading a stakeholder engagement process to identify community-driven research priorities in Batten disease and invite you to participate. Your input will help to inform and drive research priorities and investment in Batten Disease.
They are asking people directly affected by, or involved with, Batten disease to tell us what research questions they feel are the greatest priority for Batten disease research. The purpose of this study is to determine unanswered research questions that researchers and research funders should prioritize.
Who may answer the survey?
Adults ages 18 years and older who are a part of any of the following groups:
Individuals living with a Batten disease (NCL) diagnosis
Parents/caregivers of a person with a Batten disease (NCL) diagnosis
Professionals involved in diagnosing or treating people with a Batten disease (NCL) diagnosis (clinicians)
Professionals involved in Batten disease (NCL) research (researchers)
Professionals involved in Batten disease (NCL) drug development or drug approval regulation
Individuals involved in advocacy for people with a Batten disease (NCL) diagnosis or for Batten disease (NCL) research
Individuals who are involved in another way with people with a Batten disease (NCL) diagnosis (support worker, educator, relative, friend, other)
Here is the link. https://lnkd.in/e-DAEu6i
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