For Researchers and Trial Teams
The NF registry represents the collaborative efforts of patients diagnosed with NF1, NF2, or schwannomatosis from around the world. The database was created in order to accelerate research and therapy development for patients affected by NF or schwannomatosis.
The database houses the information necessary to determine the prevalence and natural history of the disorders as well as to assist in the identification of appropriate candidate patients for a particular study, all of whom have agreed to be contacted by CTF about potential beneficial research. Identifiable information for registry participants will never be released by CTF. For centers conducting clinical trials, participants who may be candidates for studies will be contacted by CTF and provided with contact information; if the patient is interested in potential participation in a study, he or she will make contact with the study center.
There are two main ways to use Registry data:
1. For help in patient recruitment, please submit an outline of the proposed study or a clinical trial protocol synopsis to Pamela Knight, CTF Clinical Program Director, at firstname.lastname@example.org
2. To apply to use the encrypted data maintained in the NF registry for data analysis, please submit a Letter of Intent (LOI) to CTF for peer-review. The LOI should provide an overview of the proposed research or trial synopsis. It may include narrative, figures, tables, etc.
The LOI should contain the following:
- Brief description of the planned study along with background, rationale, and any preliminary data
- Anticipated timeframe of completion of study
- List of collaborators and resources available, including grant support obtained or planned for this study
- Follow-up plans (if any at this time).
- Complete contact information for the PI: phone number, address, fax number, and email.
Please include the following attachments to your LOI
- Biographical sketch of PI (NIH format preferred)
Please submit the LOI with attachments to:
Pamela Knight, Clinical Program Director
Phone: (+1) 646-738-8555
You will receive an email confirmation that your LOI has been received. Review of the LOI typically occurs within 4 weeks. You will receive a response with review comments by email.