Join the Contact Registry
Why is Your Participation Important?
You (or your child) are invited to participate in a research project that will develop a registry for patients with Neurofibromatosis 1, Neurofibromatosis 2, and Schwannomatosis. In the future, we anticipate that this project will become part of the Neurofibromatosis Research Consortium, a network of clinical centers, each involved in NF research on Neurofibromatosis 1 that will be funded through the Department of Defense Neurofibromatosis Research Program in 2006.
If we are not successful in our application to join the Department of Defense Neurofibromatosis Research Program in 2006, we will send a message to all individuals who have enrolled n the Florida Neurofibromatosis Research Network to advise you how to participate in the Department of Defense Neurofibromatosis Research Program if you wish to.
The continued efforts of researchers may someday save lives and improve the quality of life for individuals with Neurofibromatosis. Their work is one part of this important equation, the other part is you.
Through Research We Can:
- Make advances in medicine
- Discover new treatments
- Prolong healthy life
- Lessen the burden of illness
- Find cures
Volunteers make it possible for researchers to find new treatments, create new studies, and work for the improvement of all our lives. By joining our contact registry, you are contributing not only to our research but to the future of all who have Neurofibromatosis.
The Contact Registry has been created to inform patients and/or parents of patients of clinical research studies performed in Neurofibromatosis. Joining the Registry will help researchers identify and recruit patients who are eligible for participation in future research studies, including research to find new treatments, better markers of disease, and the cause of these diseases.
Information contained within this Contact Registry will be used for recruitment in research studies directed at improving our knowledge and treatment of Neurofibromatosis. The continued efforts of researchers aim to improve the quality of life for all individuals with Neurofibromatosis. The work of the researchers cannot occur without the partnership with patients. Patients who participate in research make it possible for researchers to understand the development of the disease and to find new treatments. By joining our registry, you will be contributing to the research.
Who Can Join the Contact Registry?
Any patient age 18 or older, or any parent of a patient under the age of 18 who has either with a confirmed or suspected diagnosis of Neurofibromatosis 1, Neurofibromatosis 2, or Schwannomatosis can register.
Volunteers needed:
- Individuals with Neurofibromatosis 1
How does the Contact Registry Work?
After you have read and agreed to the Authorization, the Registry Form will appear on your screen. This form asks for information such as your (or your child's) name, address, birth date, place of birth, email address, items relevant to your (or your child's) diagnosis. After you have entered and submitted this information online, the data will be stored in a secure, computerized database. After reviewing the information that you submitted, if it appears that you may be eligible to participate in a research study, a representative from the Florida Neurofibromatosis Research Network will then provide you with information about the studies so that you can contact investigators if interested in participating. No personal identifying information (such as your name, address, telephone number) will be given to anyone.
Click on one of the following links to join the Contact Registry: