NF in Older Individuals

University of British Columbia Principal Investigator: Dr. Jan M. Friedman
University of Oklahoma - Project Principal Investigator: Dr. John Mulvihill

Study Purpose:

Neurofibromatosis 1 (NF1) is a progressive, life-long disorder but no studies have explored what issues are significant to middle aged and older individuals with NF1. The purpose of this study is to investigate which factors are important in older adults with NF1.

Research Procedure
We invite you to share your experiences in a discussion of what is important to older adults with NF1. We may discuss topics such as:
  • what is normal aging with NF1?
  • what are the barriers and facilitators of health and health care?
  • what are important social, psychological, financial issues?
  • other issues that the group raises as significant
    •

    We will hold three separate discussion groups for:
    (Group 1) people over 50 years old who have NF1
    (Group 2) brothers or sisters of older adults with NF1
    (Group 3) caregivers of older adults with NF1

    Each discussion group will last up to 2 hours and will be held in a location that works best for the majority of participants. Participants will be offered an honorarium of $40 to help compensate for time and local travel expenses. People coming from further away (requiring a ferry journey, from Vancouver Island, for example) will be offered up to $100 to help compensate for travel expenses.

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