Patient Families: We Need Your Help!
Help Us Make a Difference: Participate in Our Patient Survey
Channeling Hope submitted an application for a funded natural history study through Citizen! This study aims to collect, analyze, and de-identify medical records from over 50 patients. As a small community, it's important we hear from everyone! This is a significant opportunity, and we need your help to be successful.
How You Can Help
We are reaching out to gather additional data to support our application. Here’s how you can contribute:
- Complete the Survey: We have created a short survey to collect essential information. Your responses will help us estimate the number of patients with NALCN channel genetic mutations and strengthen our application.
- Spread the Word: Share this blog post and survey with others in the community. The more participants we have, the stronger our application will be.
Survey Link: https://redcap.uthscsa.edu/REDCap/surveys/?s=PHEMFFLRLTR47NC9
Deadline: March 7, 2025
Why Your Participation Matters
Natural history studies are crucial for understanding the progression of rare diseases. They help design more effective and relevant clinical trials. By participating, you contribute valuable data that can lead to better treatments, improved patient care, and, ultimately, a cure. Your loved one's medical history, when de-identified and analyzed, provides insights that are otherwise difficult to obtain.
Your Privacy is Our Priority
We understand the importance of privacy and confidentiality. All medical records will be de-identified to ensure your personal information remains secure. Citizen is committed to maintaining the highest standards of patient data protection.
Join Us in Making a Difference
Together, we can advance our understanding and pave the way for new treatments and cures. Thank you for your support and dedication to our community.