Terms and Conditions


As part of testing the NF-Web program, we are allowing individuals to participate in an online discussion board with other members of the NF-Web program. The purpose of this optional discussion board will be to serve as a social component of this online, self-guided program for people with NF. As an optional aspect of this program, the discussion board will allow you and others participating in the program to discuss topics relevant to the program, such as sharing difficulties related to NF, tips to participating in the program, goals and daily practices, and other materials related to the program. There will also be questions asked by the group leader that you can respond to in your own time during the program. These all constitute acceptable use for this discussion board.

You can access, post, modify/edit, and delete comments on this discussion board by logging into your account on the NF-Web platform and clicking the discussion link in the main menu. You will not be allowed to provide any identifiable information on this website to protect privacy during the project. We will also not share any personal or identifiable information of yours on this platform. All materials posted to the discussion board will be monitored daily by study staff and any content that identifies you individually will be removed by study staff. If this happens you will be notified. Study staff will monitor the discussion board for usage and will remove content deemed inappropriate. This includes instigating or insensitive comments, overly personal disclosure and identifying information, and irrelevant content which interferes with the purposes of this program. Consequences of inappropriate/unacceptable use will be removal of discussion materials posted, as well as potential removal from the NF-Web program and study altogether.

Although highly unlikely, by using the discussion board, you acknowledge that sharing information on this platform may lead to a loss of privacy. While the website is hosted and secured behind Partners Healthcare’s protected firewall, other participants in this program will use this discussion board and will see what you post during the course of the 8-week program. By agreeing to participate, you acknowledge that others will be able to see and possibly save (e.g.., screenshot) your posts. For this reason, your discretion is highly encouraged and any self-disclosure is at the risk of the participant. After the program is complete, the discussion board will stay open for one more week before “closing” – meaning postings and discussion content will not be accessible to participants, and records of discussion will be securely kept by our research group. Most importantly, please use discretion when posting on this discussion board. To protect your privacy, do not identify yourself or reveal personal information from which someone might identify you. If you do attempt enter personal information, it is at your own risk. We will monitor this material and remove identifying information posts. Last, sharing on the discussion board is entirely optional. You are not required to post on the discussion board at any time.

You may refer back to the signed consent form regarding participation in this study at any time to reflect on the risks to using the discussion board.