Volunteer FAQ

What is Fox Trial Finder

Fox Trial Finder is a clinical trial matching tool that helps patients and their loved ones get involved in speeding a cure for Parkinson’s disease. Volunteers who sign up on Fox Trial Finder receive a list of trials in their area, helping them determine which trials make sense for them. By matching volunteers to the clinical trials that need them, Fox Trial Finder speeds progress toward therapeutic breakthroughs, bringing better treatments to patients faster.

Why was Fox Trial Finder created?

Fox Trial Finder (FTF) was created to help increase the flow of willing participants — both people with Parkinson’s and control participants who do not have Parkinson’s — into the clinical trials that need them, accelerating the Parkinson’s drug development process. In surveys conducted by the Michael J. Fox Foundation (MJFF), as many as 80 percent of PD patients are at least somewhat likely to participate in research. But even the most motivated individuals report having trouble finding trials looking for someone like them in their area.

There at least one million people with PD living in the U.S. and upwards of 5 million worldwide — not to mention millions of relatives, friends and supporters of people with Parkinson’s around the globe. There are many people like you ready to get involved with Parkinson’s research, and abundant opportunities for volunteers to do so. Now, Fox Trial Finder makes it easy to identify trial matches.

Who created Fox Trial Finder?

Fox Trial Finder was created in 2011 by The Michael J. Fox Foundation for Parkinson’s Research (MJFF) in an effort to speed recruitment in clinical trials. MJFF staff manage FTF, working with trial teams to ensure that complete and accurate trial information is available for all actively recruiting Parkinson’s clinical research.

What happens to my data?

All data you provide to FTF is maintained in a database protected by industry-standard security protocols. This database is dedicated solely to the clinical trial matching process and is kept entirely separate from MJFF’s other record keeping and databases.

The data that volunteers provide to FTF is used to facilitate improvements in clinical research. First and foremost, it is used by the FTF algorithm to suggest matches between volunteers and recruiting trials and to help trial teams learn more about the volunteer before suggesting an in-person screening for a certain trial. Aggregate data from FTF may also be used to report on broader trends and statistics from the tool.

The information you provide as a volunteer is never publicly linked to your name or personal identifying details; your identity is revealed to a trial team member only if you choose to share it with the trial team member yourself.

Registered trial team members can use Fox Trial Finder to search for volunteers with specific characteristics. If volunteers matching those characteristics are registered, their profiles (less any personally identifying details) will be returned to the trial team, who can then reach out to these volunteers with a message through Fox Trial Finder.

Who can use Fox Trial Finder?

Fox Trial Finder is for anyone interested in participating in a Parkinson’s disease clinical trial or study. This includes both people with and without PD. Whether you’re new to research or you have already participated in trials, FTF makes it easier to learn about trials that need someone like you.

FTF is also a tool for trial teams recruiting study volunteers. Registered trial team members can use FTF to connect directly with promising candidates for their trials through an on-site messaging feature. These connections are made anonymously to protect the privacy of registered volunteers. If you are a member of a trial team and would like to learn more about how to use FTF to support recruitment in your trials, you can learn more in the For Researchers section of the site.

How does Fox Trial Finder differ from other Web sites that list PD clinical trials?

Fox Trial Finder (FTF) is a Web-based platform that not only lists ongoing PD clinical trials, but matches volunteers to the trials that need them and are best-suited to their specific traits. Fox Trial Finder facilitates the connection between volunteers and trial teams, making it much easier for volunteers to find and act on suitable opportunities to get involved.

As a registered volunteer, you can save a profile on FTF, which allows FTF to alert you when new trials that may be matches are added. Fox Trial Finder takes the work out of searching for the best clinical trials for you. You can be part of speeding PD breakthroughs — just sign up once and you will be alerted when new trials start recruiting that match to your profile.

FTF is also the first bi-directional trial match tool, which means that in addition to a volunteer reaching out to a trial team about a trial, FTF also enables PD trial teams to connect directly with potential volunteers when a possible match is identified.

How does the FTF matching process work?

Taking into account the details you’ve included in your profile (location, age, medical history, etc.), Fox Trial Finder’s matching algorithm goes into action to identify the potential trial matches nearest your location.

While it is true that not everyone will receive matches as soon as they sign up, by establishing a profile volunteers ensure that Fox Trial Finder can alert them when a match does become available. Registering with FTF is an important step in communicating to clinical trial teams that the volunteers they need are out there and ready to get involved.

Whenever there is a match between a volunteer and a trial, either party can initiate contact through a secure messaging tool within FTF to further explore the opportunity to participate. Your personal identifying details are never made available to a study’s team member unless you share this information directly with him or her. Connecting with a trial team member allows you to ask questions, address concerns and discuss an in-person screening.

How are studies submitted and approved for listing on FTF?

Studies are either pulled from the United States’ government-sponsored web site clinicaltrials.gov, or submitted directly to FTF by the study team. When a trial is submitted directly by a trial team, MJFF requires submission of a regulatory approval letter to prove the safety of a trial before it can be posted to Fox Trial Finder.

Trial team members:Click here to register yourself or a trial with Fox Trial Finder. Have questions? Email us at support@foxtrialfinder.org.

Is every trial on FTF funded by MJFF?

No – Fox Trial Finder lists every Parkinson’s-related clinical trial that is currently recruiting volunteers.

How can referring physicians and other healthcare professionals use Fox Trial Finder?

Physicians, nurse practitioners, physical therapists and other care providers for those in the PD community play a vital role in speeding clinical trial recruitment. These individuals are invited to use FTF to find trials taking place in their area, to alert patients to studies, and to help spread the word about Fox Trial Finder by sharing the tool with their patients. If you are interested in sharing Fox Trial Finder with your patients, let us know by emailing us at support@foxtrialfinder.org.

How does FTF protect the privacy of site users and the rights of trial participants?

To ensure user privacy, all information provided by users is maintained in a secure database and is accessible only to MJFF staff-appointed site administrators. When you register with Fox Trial Finder, you are asked to provide information about yourself and your experience with PD. This is necessary to facilitate the best possible trial matches. Only de-identified profiles are viewable on the site itself – your name and personal contact information remain private unless you choose to share it with a trial team.  For more on this, refer to the Volunteer Privacy and Security section of the site.

How can I spread the word about FTF to my friends and family?

We need your help in spreading the word about Fox Trial Finder! Talk about your participation at work, book club, sports practice, religious organization, or family dinner. Consider the many ways to spread the word about Fox Trial Finder online, too, by sharing links to trials or information on the site. You can also share FTF on Facebook, Twitter, and via email by using the links in the upper right hand corner of the site.

Fox Trial Finder has various informational materials to help spread the word about the need for clinical trial volunteers in Parkinson's disease (PD) research. To share these resources in your community and help spread the word about Fox Trial Finder, order your supplies today:https://www.surveymonkey.com/s/ftforderform.

If you are a registered volunteer and would like to do more to spread the word, consider becoming a part of the Fox Trial Finder Ambassadors program.

How can I learn more about Parkinson’s disease?

Parkinson’s disease is a chronic, degenerative neurological disorder of unknown cause that affects upwards of 5 million individuals worldwide. While advancing age remains the greatest known risk factor, some people are diagnosed at age 30 or younger.

Numerous resources are available to help you learn more about Parkinson’s disease. Visit the MJFF Web site to read about the disease, watch a video on how PD affects the brain, and find guides for newly diagnosed and caregivers. You can also follow the Foundation’s Foxfeed blog to get all of the latest news and updates on PD research. The site also provides links to other Parkinson’s organizations and resources such as books and videos.

A basic web search of Parkinson’s will also lead you to other national and regional resources on PD.

*Information on The Michael J. Fox Foundation or any other Web site should be used for general information purposes only. If you have or believe you may have Parkinson’s disease, The Michael J. Fox Foundation strongly recommends that care and treatment decisions related to Parkinson’s disease be made only in consultation with a your physician, a movement disorders specialist, and/or other qualified medical professionals.

How do I report issues I am experiencing with Fox Trial Finder?

Fox Trial Finder was designed to be a friendly, easily navigable tool that anticipates our users’ needs. Please let us know how FTF can better serve yours. If you are experiencing difficulties or have suggestions on how to improve the system, email us at support@foxtrialfinder.org and we will respond as soon as possible.


Next Steps

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