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Patient Registry Coordinator

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KCNT1 SLACK EPILEPSY FOUNDATION INC

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  • Design and oversee the implementation of registry surveys. If you don't have experience in designing surveys but willingness to learn you could help in ongoing support, project management, and maintenance of the registry
  • Ensure regulatory requirements are met: complete R&D and IRB applications, prepare for audits, and report protocol deviations
  • Ensure compliance with study protocol, including informed consent, safety and data security requirements
  • Serve as a liaison between the key stakeholders to ensure effective collaboration and to meet research objectives
  • Track and monitor subject recruitment, study/project progress, and data collection activities
  • Perform quality assurance activities for ongoing studies/projects
  • Identify issues related to the registry and propose solutions
  • Evaluate other registry platforms and EHR collection solutions
  • Prepare reports, presentations, and data summaries
  • Engage with investigators and research subjects requesting information on the repositories
  • Some experience with Tableau is important

More opportunities with KCNT1 SLACK EPILEPSY FOUNDATION INC

No additional volunteer opportunities at this time.

About KCNT1 SLACK EPILEPSY FOUNDATION INC

Location:

PO BOX 465, CONTOOCOOK, NH 03229, US

Mission Statement

The mission of the KCNT1 Epilepsy Foundation is to support research and drug development efforts focused on finding a cure for KCNT1-related epilepsy. The KCNT1 Epilepsy Foundation supports the KCNT1 community with educational resources and the latest research information.

Description

We are a small foundation of parent volunteers. To help run our organization and facilitate the research and drug discovery process the Foundation is funding or has plans to fund the following:

  • A patient registry The registry allows patients from around the world to input their data and provides the Foundation with a mechanism to contact them when trials become available. We need help managing the registry.

  • A biobank of patient blood and tissue samples will be made available to select researchers to support basic science research and drug discovery.

  • Ongoing data analysis efforts to track symptoms of the disease, what medications and therapeutics work, and how this disease effects families over time. We need help from clinical psychologists, physicians, data scientists.

  • We need help with the businessinfrastructure website updates, marketing and fundraising

  • We need help establishing a Grant process for academic and private programs in need of initial seed money or ongoing contributions to fund innovative research or promising therapeutics

Health & Medicine
People with Disabilities

WHEN

We'll work with your schedule.

WHERE

This is a Virtual Opportunity with no fixed address.

SKILLS

  • Administrative Support
  • Program Management
  • Research
  • Database Administration
  • Analytics

GOOD FOR

N/A

REQUIREMENTS

  • Must be at least 18
  • Orientation or Training
  • Must get the certification in Human Research Protection training at our cost. https://www.hhs.gov/ohrp/education-and-outreach/online-education/human-research-protection-training/index.html
  • Knowledge of statistics, outcomes data analysis, healthcare, real world data would be beneficial.

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