What Makes the Registry Valuable
Why is the NF Registry so important and how exactly will the information be used?
The purpose of the NF Registry is to increase knowledge about all forms and manifestations of neurofibromatosis. This is done by studying the commonality of specific NF characteristics across all patient populations, and then connecting eligible NF patients to relevant research studies and clinical trials. The ultimate goal is that this exchange of information will improve research and more quickly lead to the improvement of the well-being of people with NF and their families.
How private is private?
This may be the most important question, as your NF history is very personal and important to you. The NF Registry protects you by using the highest standards for data security (HIPAA, GDPR) and ethical use (Western Institutional Review Board). When filling out the patient questionnaire, you are free to answer (or not answer) the questions at your personal comfort level. The NF Registry will then only contact you if you give permission. Your information is not shared with the Children’s Tumor Foundation or any other organization, and it will never be used for fundraising or marketing.
How do we know the NF Registry is working? Has it had results?
Yes, absolutely! In addition to connecting NF patients with specific research studies and clinical trials, NF Registry studies have provided critical information about where and what type of NF care is available to patients, especially for adults with NF. This will help doctors and researchers better plan for future care and treatment options for patients of all ages and types. Increased knowledge about specific manifestations of NF is also helping researchers improve treatment considerations, and patients are reporting back improved lifestyles. For example, an adult NF2 patient maintained his hearing because of the chance to use a specific drug, and the parent of an NF1 patient was given a more comprehensive range of treatment possibilities for her young child.
I understand the NF Registry is important and safe. What happens when I join?
When you join the NF Registry, you will have access to the latest discoveries about the many ways living with NF1, NF2, or schwannomatosis can affect individuals and families, which will help you and your family find the best possible care.
As an NF Registry participant, you have the option of completing a yearly health survey. This data helps researchers study how NF affects everyone differently and changes over time. You can then choose whether to receive personalized emails about:
- Clinical trials and research studies relevant to you or your child
- Updates to NF care recommendations
- Research announcements and news
- Surveys, designed to get patient input on key NF challenges
- Educational materials specific to you
- Resources to help you on your NF journey
Even if you choose not to be contacted, your participation helps researchers learn from the real experts – NF patients and families.