1. Serving the Participants Empowering the Researchers
Your online recruitment and education platform!
ResearchMatch.org
Serving the Participants
Empowering the Researchers
Speaker: Loretta Byrne RN MS CCRP
Research Services Consultant
Recruitment Innovation Center
In 2010 RM was created to support research teams across the country and benefit people who are interested in learning about research studies, whether they are healthy or have a medical condition.
I am Loretta Byrne and I was a research nurse specialist in clinical pharmacology for many years. I used RM as one of my methods and tools to reach people that were willing to participate in our complex studies.

2. RM is funded by NCATS, the National Center for Accelerating Translational Sciences,
it is a free resource to volunteers and researchers.
RM is designed to promote the completion of clinical trials by matching individuals willing to participate in research with researchers nationwide.

3. Together as a consortium the CTSA institutions formed the backbone of this national shared registry.
This map is showing the sites of the institutions currently in the network!
Joining the network requires signing a legal agreement and assigning at liaison with their researchers’.
The registry was expanded beyond the CTSA in 2014 and there are now 138 nonprofit research institutions participating and as a network we generate the 557 currently active on the site.
59/64 CTSA are in the network.

4. 44,035 have no reported conditions
RM’s mission is to remove barriers to patient participation in research!
How?
We invite people from all walks of life, all racial, ethnic, socio economic status to gain access to research opportunities that they would most likely not learn about otherwise.
Adults unable to register or people under the age of 18 can be registered by their guardian.

5. Top 10 Conditions Reported by RM Volunteers
Contact Metrics for RM Volunteers
% of Volunteers Contacted
98%
% of Volunteers who Have Responded “yes” to an Invitation
59%
Condition
#Volunteers
Depressed mood
11,665
Hypertensive disease
8,544
Anxiety
7,077
Asthma
6,627
Migraine disorders
4,704
Fibromyalgia
3,782
Attention deficit hyperactivity disorder
3,737
Hypothyroidism
3,699
Gastroesophageal reflux
3,539
Hay fever
3,447
Over 10,300 Volunteers With Rare Diseases
Total of 6,998 Unique Conditions Reported by Volunteers
5,700 Pediatric Volunteers
13,300 African American Volunteers
9,400 Hispanic Volunteers
RM is an easy to use, free and effective tool for recruitment!
These data are taken from the website and show you the top ten health conditions reported by the volunteers.
The demographics of the volunteers are divers but like other registries, Since % contacted
59% say yes
You can see the top ten reported conditions on the website

6. ResearchMatch is a national platform
which connects researchers with people interested in research
The researcher sends IRB approved messages via to potential participants!
People that are interested in hearing more about a study
Release their contact information --- via ResearchMatch --- to the researcher
Volunteers make the final choice
To share their identifiable contact
information with the researcher
1-At ResearchMatch the protection of the volunteers’ contact
information and health data is essential.
2-RM uses a clearinghouse model that blocks identifying information on a researcher’s screen until the volunteer specifically gives approval to be contacted for a specific study.
3-*Even after receiving such approval, researchers using ResearchMatch must agree to treat all identifying information as confidential and use it for only the study which is registered.
Show slide
* A volunteer has no obligation to ever say yes to an message.

7. Step 1: Potential volunteers register to indicate a willingness to be contacted for research studies.
5-10 minutes
Powered by
So the volunteers Medical condition information is collected only if they are willing to share their health information with us.
To help them with this process we use the Unified Medical Language Systems library.
We collect use of prescriptions and over-the-counter medications.
We also ask if they are a twin, a veteran, a smoker and or a parent.
-We enable each volunteer to tell us their preference on travel (e.g. only contact me for studies requiring travel < 50 miles) This does not preclude
volunteers from participating in Behavioral survey studies
All data are securely stored on Web servers maintained within the Vanderbilt University firewall. All research subject recruitment data sent between Web server and browsers are encrypted using Secure Sockets Layer protection.
All identifiable health and contact information is stored within the database in encrypted format.

8. Your IRB approved your study
Step 2: Registered researchers search for individuals based on study inclusion criteria and geographical location
Two Types of Access:
Feasibility Access –aggregate information - no IRB required.
Recruitment Access – requires IRB-approved protocol and message.
Your IRB approved your study
Your IRB gave you approval to use ResearchMatch
Your IRB approved the contact message
Follow your institutions instructions
Follow the RM Researcher Agreement
Researchers on RM can be the PI but most often they are the approved proxies for the PI.
Researchers can request Feasibility access which allows them to view aggregate data regarding the ResearchMatch population with out having IRB approval.
Recruitment access allows them to search and send information to volunteers and this requires approval from your IRB.
Researchers agree to follow their institutions instructions and the Researcher Agreement Form.

9. Researcher Empowerment
Feasibility search of database
Researcher initiates contact
Go beyond the walls of the university
You choose who sees your IRB approved message
RM volunteers control the release of their contact information
Contact information from the interested participants is presented back to you
You follow GCP and your protocol
ONLY read slide
Researchers are employees or affiliated staff at academic medical centers or
hospitals that have joined the ResearchMatch network. Once
registered as a researcher, a principal investigator or designated research
study coordinator may search the registry to find volunteers matching his
or her study’s inclusion/exclusion requirements. .

10. Sneak Peak So once your register and have feasibility access here:
Is Your researcher dashboard which provides an at- a glance overview of the studies you have registered
Contact information for the liaisons
How to sign up for training
And the starting point for finding volunteers
Start by finding volunteers using your basic inclusion criteria.

11. register the study with your liaison choose the study type
add a pre-screening eligibility survey
Submit request with the IRB Final Approval Letter to the liaison at your institution.
1- Requests to use RM get approval through the study PI and the institutions liaison.
Institutional liaisons are appointed by participating institutions to authorize local research teams to use ResearchMatch.
Liaisons typically have a strong interest in community engagement and study recruitment.
They also maintain familiarity with their IRBs’ regulatory procedures.
SO----GO TO THE SCREEN AND CLICK THROUGH
A researcher can add a prescreening survey url link with a new study or to an existing study.
This option is only for recruitment studies (interventional, not for survey research)
This eligibility survey must be approved by your IRB and created in REDCap1

12. Once their access requests have been authenticated and approved, researchers
may recruit potential study participants.
ResearchMatch’ s interface lets researchers filter the list of volunteers by
Using one or more of the following criteria:
Geographical location (by maximum distance from one’s institution
and/or state of residency)

13. 118,000
20,000
7,000
800 58
Demographic data (age, height, weight, body mass index, gender, race, ethnicity, tobacco use, multiple birth status)
Medical conditions (by choosing volunteers who reported no medical conditions or by using text strings, which undergo the same process of being matched to
terminology in the UMLS metathesaurus)
and medications (similar in process to medical conditions).
Creating a cohort of potential participants to message,
A cohort that will be likely to meet your inclusion/exclusion criteria.

14. Researchers may use clustering of conditions and Boolean
logic when specifying filter criteria
This mapping of text to UMLS atomic unique identifiers and concept unique identifiers is essential so that researchers, whose technical
terminology may differ from volunteers’ lay language (e.g., “hypertension” versus
“high blood pressure”), can still find matches.

15. Finish Search: View anonymous health profiles to finalize list of potential ‘matches’ to contact with the study’s initial recruitment message.
View anonymous demographic information: Age, BMI, conditions, medications
Then RM shows you your list of the people that you may want to contact. You still only have anonymous information. BUT if you click on DETAILS you will see the health information of these people.

16. Only IRB approved contact message here
No contact information
No URLs
Now the research puts in only their IRB approved language for ResearchMatch.
If the researcher has an IRB approved REDCap pre-screening survey
An additional spot is made available for them to put in the url before they message volunteers
The volunteer does not see the prescreening survey
in the first from RM with the contact message.
They are only re-directed to it, if they tell us YES.

17. ResearchMatch is a national platform
which connects researchers with people interested in research
The researcher sends IRB approved messages via to potential participants!
People that are interested in hearing more about a study
Release their contact information --- via ResearchMatch --- to the researcher
Volunteers make the final choice
To share their identifiable contact
information with the researcher
So remember I showed this slide before-
After the researcher chooses a de-identified list of people to be contacted, they submit an IRB approved message about their study that RM will to the volunteers !
After the contact message is ed
*** Volunteers make the final choice to share their identifiable information for direct contact.

18. The volunteer receives an email from ResearchMatch that looks like this
If they say “no thanks” RM protects their anonymity
If they say “yes” RM notifies the researcher

19. After a volunteer views a contact message and tells ResearchMatch “YES” release my contact information to the researcher,
they are presented with this screen.
They are informed that if they confirm ‘YES” again, ResearchMatch will RE-DIRECT them to the Researcher's REDCap survey.

20. Researchers then get an email notification of an interested volunteer and can access their
study-specific dashboard to see the volunteer’s contact information.
They may then follow up by contacting interested volunteers by , phone, or
surface mail.
Further steps, such as study education and consent processes, are performed outside the purview of ResearchMatch.
Researchers are encouraged, though, to use their study specific dashboard to track the status of
interested volunteers as they are contacted and then enrolled or deemed
ineligible for a study.

21. Serving the Participants
Search for trials yourself
Educational links
Share Your Voice with Researchers
Non-profit Patient Advocacy Groups
Published manuscripts
Stay connected with newsletters and social media

22. My volunteer dashboard

23. Puts volunteer in the drivers seat!
Easier to use than ClinicalTrials.gov
Actively recruiting in the US
Directly contact researchers
To facilitate better patient access to clinical trials information, we have designed and implemented a public-facing interface leveraging data available from clinicaltrials.gov, called ResearchMatch Trials Today, focused particularly on the needs of individuals seeking clinical trial options.

24. By asking the user for some demographic information and their own desires and needs for a study the interface hones in on the user needs and then presents the user with relevant studies that may be of interest to them.
Trials Today is freely available and offered to anyone without any need for authentication or registration, with the aim of minimizing potential barriers to use.
It has no advertising from pharma companies and accepts no industry sponsorship.
A variety of conditions accounted for the 10 most searched for topics in Trials Today (Table 2), including chronic mental health issues (e.g., depression, anxiety, ADHD, bipolar disorder),
other high prevalence chronic health conditions (e.g., obesity, diabetes),
and less common diseases with more challenging paths to diagnosis and/or treatment (fibromyalgia, peanut allergy, idiopathic pulmonary fibrosis (IPF)).

25. Return Results back to volunteers
Because many volunteers want to know what happened as a result of their participation and dissemination of results is so important to our stakeholders-
The website also has a Results page that displays the manuscripts corresponding to studies in ResearchMatch.
We are trying to close the loop and get back to the people that made the entire study possible - the volunteers.

26. American Lung Association
To expand the projects reach and increase awareness of ResearchMatch to more potential volunteers we establish partnerships with pt. advocacy organizations and local community based organizations.
Links to our partners are shown to volunteers on their dashboard, in the search modal and on the network page. We engage on social sites and promote their websites in our newsletter which is sent to all 118,000+ volunteers.
Examples:
American Lung Association
NORD (National Organization of Rare Disorders)
FARE- Food Allergy Research and Education
CISCRP
Dysautonomia International
ROAR Recruiting older adults into Research
Global Genes
National Institute on Aging (ROAR)
Michael J Fox Foundation

28. Quarterly Newsletters to volunteers researchers and
liaisons.

29. Stay connected to stakeholders:
Results of 1 published study is distilled and posted on our social media sites.
And we are hoping to facilitate webinars at which a researcher could discuss their recent publication and take questions from the audience.

30. This is your registry! Adopt and amplify!
What can be improved?
“Better User Interface”
Greater diversity of volunteers
This is your registry! Adopt and amplify!
Put RM on your website
Share RM with people that you screen for your studies, especially those who aren’t eligible
Share RM materials in your clinic/research/office area
Create a great pre-screening survey and better recruitment messages!
Plan how and when to send messages
Use filters wisely! Cast the right size ‘net’

31. Flyers

32. Print and disseminate brochures
Borrow one of our banners for your waiting areas or for conferences

34. Contact us for help: info@researchmatch.org
The VUMC Team:
Leah Dunkel
Nicollette Davis
Michael Russell
Aimee Edgeworth
VUMC IRB
Paul Harris PhD