It can be challenging to get word out to potential participants about clinical trials. The first source for clinical trial information is often the patient’s doctor. However, according to CISCRP’s 2023 Perceptions and Insights study, most patients do not discuss clinical research with their physician.

Without a doctor’s guidance, patients may be at a loss where to go for clinical trial information. is a solid central source, but the site can be difficult for a layperson to use, and the information tends to be technical. Beyond that, information tends to be scattered across dozens of websites, making it tough for the patient to know where to look first.

One good source for information on clinical trials, especially for rare diseases, is the website of a patient organization created specifically for people with that disease. Sometimes sponsors seek to communicate with these patient organizations to get the word out about their trials. But they are unable to connect due to the patient organizations’ lack of availability or staff shortages, among other reasons.

 Jenn McNary

Jenn McNary is co-founder and principal, Canary Advisors, a boutique patient advocacy consulting firm that works with organizations set on patient-focused drug and device development. She is also co-founder of One Rare, a nonprofit forum designed to meet the needs of young adults living with rare diseases and chronic conditions. Her son Austin Leclaire is a board member of One Rare who’s living with Duchenne muscular dystrophy.

McNary notes that these patient organizations are often run by unpaid staff, or by an executive director who has the condition the patient organization was formed to address. So it’s crucial to start trying to contact them early and often, she says.


“What I usually counsel with companies is we start at that early patient engagement,” McNary says. “And when we’re starting to build those relationships, we don’t just reach out and ask for something. We start by saying, ‘We are interested in this space. We’d love to meet with you, we’d love to talk about our clinical trial with you. We’d like to share where we’re going. Is there a way that we can also support your organization?’

“It’s got to be something where you are offering something in return,” she adds. If you’re wanting them to set up an advisory board to give feedback or to provide some insights on your protocol or your trial design, you’ve got to figure out what they need from you. So, setting up those relationships before you have an ask is the way to go.”

McNary says where there is a will, there is a way to engage patients. “But you do have to understand that as a mom of two sons with Duchenne and one with immune deficiency and a full-time job, I want to make sure that if I’m engaging with you, there’s a return on my time investment. And that is the same with patient organizations,” she says.

Gene Jay is head, clinical trial solutions, Evernorth, an organization offering pharmacy care and benefits solutions. In his current role, Jay leads a data analytics group that leverages medical and pharmacy data to identify the right member for the right drug trial as well as the right data analytic solutions for plan sponsors.

 Gene Jay

Jay says as a pharmacy benefits manager, he represents employers trying to help get their employees into clinical trials. These employers often have the very same concerns as patients involved in the process: namely, how the recruitment is handled and the impact on their employees both before and after the trial. The employers are attuned to the difficulties a patient might have to go through in areas such as disruption to their medications.

“They're very concerned about the patient impact of clinical trials from that perspective, but they also want to be cutting edge and they also want their employees to take advantage of clinical trials as well,” Jay says. “So, it’s sort of a balance of let’s get the right patient into the right clinical trial. Not every clinical trial is right for a given patient.”

Jay says location is a big part of patient access. He says there may be times when it’s better to use a local laboratory rather than force the patient to travel a great distance to a particular site. “You work that out,” he says.


Asking the right questions

McNary acknowledges that most trial participants aren’t like Leclaire and herself, with open lines of communication directly with sponsors running studies. For more treatment-naïve patients, she says, it’s important for them to get clinical trial information from people they trust. And often, that doesn’t include the sponsors of those trials.

“I’m a huge supporter of that grassroots awareness we find from working with certain communities,” McNary says. “I did some work in the sickle cell community, for example, and I was really thinking about how do we reach patients who historically don’t have a lot of trust in the system. They don’t want to hear from me even though I’m a patient and caregiver in the rare disease community. They’re not interested even in talking to me because I’m not in the sickle cell community.”

What McNary says she learned is to start by having people whom patients trust present the information in digestible formats in places where patients are.

“People do come to me, especially in the muscular dystrophy community, and say, we have so many choices,” she says. “That’s the thing now with some of these rare diseases, we used to have one or two clinical trial options. Now we might have 40 or 50. And how are patients making those decisions? They’re making those decisions by asking people they trust.”

McNary says she and her organization respond by creating an avenue for education, both from patient advocacy organizations that can push the information out to their patients and from people and groups close to patients. She goes to wherever there may be support groups for the patient’s disease state, whether that be with genetic counselors and social workers at hospitals or the patient’s church group.

“When I’m counseling families, I won’t give a recommendation [for clinical trials],” she says. “Your doctor is going to be the best source of that information for you. But I will tell you what questions to ask.” 

Questions McNary suggests patients ask before enrollment include:

  • What are the plans for compensation or reimbursement through the study?
  • What's the schedule of events and where do you have to go and be and for how long?
  • What is their plan for after that study is over? 
  • Is there a bridge program to commercialization?
  • Is there an extension program? 
  • Can you roll over to another related study?
  • If you’ve been on placebo, can you then get the drug?

“It’s important to understand the trial design in a way that makes sense for you and your family to know if that trial is going to be the best trial for you,” she says. “So, I always counsel people to ask a lot of questions.”

The process also differs depending on whether the patient is a child or an adult. “Obviously, I used to make decisions for my sons, for Austin and Max, but they’re both over 18 now,” McNary says. “Now I’m bringing the information that I know about a study, and then I’m presenting it to them and I’m letting them know how much support I can provide. Can I travel with you? Can I help you? Can I do some of the maintenance of the engagement with the doctors and the sites? 

“But, ultimately, adults living with rare conditions have a whole other set of things to think about,” she continues. “Do they have a trusted care partner that can accompany them to trial site visits? Is there somebody that they can trust to remind them about appointments or even to administer medications if that's delivered at home? So, we’re entering a whole new world of that space as well.”

In helping patients who aren’t as savvy in negotiating the clinical trials process, Jay says the industry is trying to recruit physicians locally. “Many trials can be handled, at least some parts of the care can be handled, on a local level if the physician is trained and up to speed and expertise and incentivized in some way to provide some of the care locally as well.”

I’m a huge supporter of that grassroots awareness we find from working with certain communities.
Jenn McNary, co-founder and principal, Canary Advisors

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