A natural history study of cutaneous neurofibromas in people with Neurofibromatosis Type 1 (NF1) is currently seeking NF patients under 20 years old and over 40 years old before enrollment closes on August 31, 2024.
A participant in the Johns Hopkins Cutaneous Neurofibroma Study, Elana Loftspring explains and encourages others to join this important study. Participation is easy and incredibly important! Join now to make an impact on the research into NF1 cutaneous neurofibromas.
For more information about the study, click here, or contact Mandi Johnson at ajohn418@jhmi.edu or 410-502-7546)
Study information:
This important project is evaluating how skin neurofibromas form and change over time in people with NF1 over the course of five years. We hope that by understanding this process better we can prioritize research in this field and lead to the development of better clinical trials and treatments. This research will also help define if a novel 3-D camera system can help us monitor cutaneous neurofibromas better, this tool may be used by patients and healthcare professionals to track neurofibromas over time.
Who can participate?
People living with NF1 who are able to travel to Baltimore once yearly for 5 years
What should I expect if I decide to participate?
You would visit Baltimore once yearly for up to 5 years. During your visit you will have a medical-grade photograph taken of the whole body (you will be able to wear underwear); complete surveys that may help us monitor symptoms; donate a saliva sample for genetic testing on your first visit only; and donate a blood sample (one teaspoon) during your first visit and during the last visit.
Is compensation available?
Yes, you will receive a $50 gift card during your first visit. You may also qualify for reimbursement of travel expenses for up to $700 each visit.
For more information about the study, click here, or contact Mandi Johnson at ajohn418@jhmi.edu or 410-502-7546)
