U.S. FOOD & DRUG ADMINISTRATION
Center for Drug Evaluation and Research (CDER) Crowdsourcing Site

Share your perspective on

PML clinical trial participation

The FDA is interested in hearing from Progressive Multifocal Leukoencephalopathy (PML) patients, caregivers, and those at risk for PML about how clinical trials can be designed to include as many PML patients as possible. Learn more about this initiative, see what others have to say, or share your perspective.

Share your perspective on PML clinical trial participation

The FDA is interested in hearing from Progressive Multifocal Leukoencephalopathy (PML) patients, caregivers, and those at risk for PML about how clinical trials can be designed to include as many PML patients as possible.

At the end of the submission period on July 26th, the FDA will begin reviewing your feedback, which will inform discussions at the FDA PML Clinical Trial Design Workshop and may be summarized for publication. Please note that while your name will not be included in the publication, the feedback you provide might be included.

Share your perspective on PML clinical trials

Your responses, comments, and overall engagement will aid the FDA in incorporating the voice of the patient in PML clinical trial design....

7 submissions
share your perspective until Jul 26, 2021

Frequently Asked Questions

This online forum is a way for you to share your thoughts and interact with others in the community. Here are some frequently asked questions about participating on this site.

Crowdsourcing provides an opportunity for interaction and communication across the FDA and the public. Crowdsourcing community members can engage with each other and the FDA by sharing their experiences and commenting on the experience of others. These conversations create an avenue for the FDA to listen to the public and incorporate their perspectives into ongoing initiatives.

Once you are logged-in, click the "Post Your Perspective" button on the top right-hand corner of the page.

You can also view what others have submitted by clicking the "See what others have to say" button.

Yes!

  1. Click on your username in the top right-hand corner and select "Profile."
  2. Scroll down to "Community Identities" and check the box under "Hidden Identity" in the row labeled "PML Crowdsourcing."
  3. Click the "Save Changes" button above the Community Identities section. (Be careful to not click the "Leave" button as this will remove you from the community).
  4. To confirm that your identity is hidden, leave the profile page by clicking on the home icon at the top of the page and then revisit it by following steps 1 & 2 above. The "Hidden Identity" box should still be checked. (There is a known bug that shows the "Hidden Identity" checkbox as unchecked after you click the "Save Changes" button. Refreshing the page may not work to confirm your changes are saved, which is why leaving the page is recommended).

You can also participate anonymously by turning on the "submit idea confidentially" before submitting your post.

  1. Click the "Post Your Perspective" button on the top right-hand corner of the page.
  2. Fill out the required fields.
  3. Scroll to the bottom of the submission page and turn on the submit idea confidentially" button prior to submitting.

Please note that no matter what option you choose to participate anonymously, you will still see your name attached to your post. However, the rest of the community will only see "Community Member" instead of your name.

You can also participate by using an alias. To use an alias, follow these steps:

  1. Click on your username in the top right-hand corner, and select "Personal Settings"
  2. Look for the "Usernames" section click on "[Manage]"
  3. Insert your alias and click "Save Changes"

The information gathered in your registration will not be shared and is only used for log-in and verification purposes.

The information you submit and the comments you post will be used to understand the relationship between community participants and PML.

Please do not post any personally identifiable information (PII) (such as address, social security number, etc.).

This site is moderated by staff in the Center for Drug Evaluation and Research within the U.S. Food and Drug Administration .

Moderators will facilitate discussions and work to ensure that posts remain respectful. Please be advised that moderators may not always monitor discussions in real time. Due to the potential volume of comments, moderators may not respond to all posts.

If you have specific questions, we encourage you to share them via email with our FDA staff at ShareYourVoice@fda.hhs.gov.