2025 CIDP Collective Ground Rules

Background:  

The sponsor of this forum will not have access to your personal information or be able to tie your responses directly back to you. Their intention behind this forum is two-fold: 

• First, to give CIDP patients a chance to share their experiences, connect with one another, and learn from each other. 
• Second, to learn from patients to be able to better support people living with CIDP. 

As we go through each activity in this forum, when possible we will try to be transparent with the ultimate “goal” of the questions. However, please understand that while some questions may seem “silly” or “basic” relative to your lived-experience with CIDP, this could be something that is very important to someone else OR something that is helping us to getting a better understanding of your overall mindset, experiences, or perceptions 😊 

If you have any questions (now or anytime throughout the forum!), please don’t hesitate to message the moderator (Christina) directly. You can do so using the “messages” icon on the top right of the forum home screen or via email at christinaa@kjtgroup.com.  

Ground Rules:

Throughout our time together, we want to keep this forum a safe and welcoming space for all. Each of you has a distinct perspective and has had unique experiences, and we want to allow the opportunity for you to share your thoughts and feedback openly. As such, the following will not be tolerated from any forum member.

• Fighting with or demeaning other forum members or forum moderator
• Using foul or inappropriate language
• Screen-grabbing and distributing information shared in the forum outside of the forum
• Promoting or discouraging use of specific medications
  • Note: While we want to hear about your experiences, this forum is not a place to promote OR discourage a particular medication, please be mindful of that.

We fully understand that when sharing experiences, you might inadvertently share something that is considered a “violation” of the forum rules. We’ll give you a warning if this is the case, as we are here to create a safe zone for sharing. If it happens multiple times we will need to close your account. Forum members who have been found to have violated these rules will be given 2 warnings before being removed from the forum.

If any additional unforeseen situations arise that may require you to be removed from the forum, you will also be given a warning prior to closing your account.

While we hope this becomes a social space for you to connect with others diagnosed with CIDP, the forum is also a research engagement. Therefore, the following will also be monitored and may result in removal from the forum.

• Repeatedly providing insufficient or irrelevant answers to activity questions (e.g., yes/no answer when asked to explain a situation, extremely off-topic responses)
• Using generative AI tools to write your responses. We want to know about your perspective, not the information that an AI tool has aggregated.
• Providing information that is too personal or revealing (this research is intended to be single-blinded – i.e., you are anonymous to the Sponsor – please do not provide details that would reveal your identity!)
• Repeatedly missing activities or not participating.
  • If you miss 2 activities in a row without explanation to KJT, we might conclude you’ve lost interest in forum participation. We’ll reach out with reminder emails and/or calls and will close your account if we don’t hear back after a while. We understand life can become unpredictable, and we don’t want to bother you with emails if you’ve lost interest or can no longer participate; but we also want to know if you wish to continue participation but need accommodations.

While this research is not intended to solicit safety information or adverse events, it may come up. Please see the forum home page for a link to a copy of the adverse event reporting language you agreed to in qualifying for this research.

Compensation:

Every month, you will have the opportunity to participate in research activities and discussion posts.

• What is an activity?
  • Research activities can be found in the “Activities” tab above.
  • Activity content will vary, but it will typically involve answering about 10-20 questions. These questions may contain things such as open-ended responses, polls, ranking exercises, creative exercises, and more!
  • The activities are expected to take about 20 minutes each to complete – though depending on how much you type or have to say about a topic, it may be a bit more or less.
• What is a discussion post?
  • Discussion posts live in the “Discussions” tab above.
  • These are broad topics/questions that are posted for open response and discussion. 1-2 discussion topics may be available at any given time.
  • Participation in discussion posts will allow you to engage with other forum members and will provide the opportunity for additional compensation each month above and beyond activity participation.
• When do I participate?
  • On the homepage of the forum, you will always be able to find the start and end dates for the current and next available activities. You will also receive notification emails when new activities are posted.
  • Anytime between the start and end date, you can complete the activity at your leisure! We recommend completing earlier if you can, as the moderator may have some follow-up questions for you to answer later on.
• What do I get for participating?

By the 15^th of next month, you will receive an email from Tremendous.com with your compensation for your time and feedback from the prior month. You will receive honoraria every month after that by the 15^th, if you continue your participation.

There will be an additional $50 bonus at the end of the 3 months if you have completed all activities in all months.