FAQs for Volunteers

 

What is the Pioneers Recruitment Registry?

The Pioneers Recruitment Registry is a website that allows members of the public to easily become involved in medical research at several different participating institutions. It is operated by Frontiers: The Heartland Institute for Clinical and Translational Research, a regional partnership of hospitals and medical schools headquartered at the University of Kansas Medical Center.

What if I'm concerned about the distribution of my identity or email address?

If you are concerned that your personal information and/or email address has been improperly distributed, or that there may have been a breach of data, please contact us immediately (pioneersresearch@kumc.edu or (913)588-6290).  Pioneers takes many precautions to ensure that your personal information is stored securely and is only released to those researchers who have proven that their study is legitimate and is looking for appropriate participants. 

What is the "I AM INTERESTED" button?

The "I AM INTERESTED" button at the bottom of some study listings is a link to a study interest form. Volunteers who click "I AM INTERESTED" will be ask to complete their Pioneers registration, including the medical history survey, if they have not already done so. They will then be able to fill out an interest form for that specific study. Depending on the study, the form may be one question or multiple questions. When completed, the form and the volunteer's contact information will go to the study team for review. 

What is a clinical trial?

Clinical trials are ways to test new medical treatments and other ideas to prove that they are safe and effective. Treatments must first be demonstrated that they are safe to use in a lab setting before they can be tested in humans to see if the treatments help with a specific disease. Trials can involve new treatments for diseases, new techniques to diagnose diseases or other options to improve a person’s quality of life.

Researchers determine the rules of each trial, including the age, race, sex, and medical conditions needed for participants in each trial, appropriate dosages of drugs and the duration of the study.

Are clinical trials safe?

The U.S. Food and Drug Administration (FDA) works to protect the safety of participants in clinical trials and also makes sure that participants are provided with relevant information pertaining to their trials. (http://www.fda.gov/ScienceResearch/SpecialTopics/RunningClinicalTrials/default.htm)

However, clinical trials still do carry some inherent risk, as most of the research involves new medical treatments. Researchers for individual trials can address any specific questions pertaining to those trials.

What kind of time commitment will I be making to participate in a clinical trial?

Each study is different. The duration of the study can vary, from weeks to months or longer. Typically, participants in a study will make periodic visits to a clinical site, which could be a hospital or other clinical research center. Specific details will be provided with each individual trial.

Why should I participate in a clinical trial?

People choose to participate in clinical trials for a variety of reasons. Some people with chronic diseases have exhausted all other available treatment options. Others may be interested in advancing medical knowledge.

What will be done with the information I provide to the Pioneers registry?

This diagram summarizes where data is stored and who can access your personal data.

Pioneers Process Diagram

We separate the information you give us in two groups that are handled differently:

de-identified --> this includes general information about age and other demographic factors along with health history. Anything that has identifying information (name, e-mail, address) is NOT included.

identified --> this includes name, e-mail address, and other identifying information. Access to this database is restricted as described in the figure.

Researchers who are part of the academic and health systems sponsoring Pioneers can use a search tool to count the number of people who have certain medical conditions in our de-identified database. They do not have access to any identifying information in this process. This is helpful for researchers who are planning a future study.

When a researcher is ready to start their study, they may request to contact people who are in the database. They submit their request to a data request committee who reviews the safety and merit of the study. If the request is approved, a database administrator (also known as an honest broker) looks up contact info for the people who  meet the study criteria, and shares this with the study team. The research team may contact you about participating in the study if you are one of the matching candidates.

See also the Pioneers registry privacy policy

If you are concerned about the distribution of your information, or feel your privacy has been breached, please contact Pioneers at pioneersresearch@kumc.edu or (913)588-6290. 

When will I see results of the studies I volunteer for?

This is a difficult question to answer, as the length of time may vary from several months to several years. For example, if you are one of the first people to enroll in a 3-year study, the results will not be known for over 3 years. Once the study is finished, it takes additional time (usually several months) to analyze the data and write the articles that summarize the results. Many studies that are registered on clinicaltrials.gov include a summary of results within a year of study completion. Clinicaltrials.gov provides patients, their family members, and the public with easy and free access to information on clinical studies for a wide range of diseases and conditions.  Even when study results are "negative," for example, if a treatment does not change a patient's condition, this helps to move the science forward and researchers learn which questions to ask next. We encourage all researchers who use the Pioneers registry to inform their research participants about the specific study results, as a way to thank you for particpating in clinical research.

How does the process for signing up for the Pioneers registry work?

People interested in volunteering for research trials can fill out a short form, providing some details about contact information and medical history. Volunteers are matched with potential studies where they fit the eligibility criteria.

No one will be automatically enrolled in a trial. Members of the Pioneers registry will have the opportunity to join or decline to participate in each study opportunity.

Is there a cost to participate?

It is free to join the Pioneers registry and participate in clinical trials.

How will I be notified if I match a study?

You may receive an e-mail or phone call from the study team.  You may be asked to provide additional information, and you will be given the opportunity to decline to participate in the study.  While some people may be contacted quickly, others may not be contacted.  

How do I update my medical history information?

To update your medical history information, please contact pioneersresearch@kumc.edu.  Upon notification, a member of the Pioneers team will contact you via phone to update your information.  Please do not submit any personal medical information via e-mail. 

How do I remove myself from the Pioneers registry if I choose to?

You can remove yourself from the registry at any time.  Follow the opt-out link on the Welcome page.  Click "Cancel Account" from your account page.  Once you cancel your account, your information will be removed within 7 days.  Please contact pioneersresearch@kumc.edu with additional questions.

Is there an additional place to go if I have more questions?

Contact pioneersresearch@kumc.edu.

Why does the account creation pop-up disappear?

If trying to create a Pioneers account using Facebook, Twitter, etc. in Internet Explorer, the pop-up may close automatically or return a page not found message.  To correct this issue, you can edit your security settings for the Internet Explorer browser.  You can do this by clicking on the Security Tab within Internet Options and unchecking the Enable Protected Mode option.  Restart the browser and the issue should be resolved.  Please use caution as this will change the settings for all websites you visit via Internet Explorer.  If you do not want to change your security settings, another option is to create an account without using a social media tool.