4 ways to improve your Sjogren’s syndrome’s study enrollment rates
While Sjogren’s syndrome is not officially considered a rare disease, its prevalence of 0.2-0.5%, and its ability to go undiagnosed through individually varying symptoms, make it particularly difficult to find and recruit patients for clinical trials.
At the time of writing this blog, there are 72 studies either planned, or actively recruiting (according to ClinicalTrials.gov). This, coupled with the rising number of worldwide patients with Sjogren’s syndrome expected to grow to 2.5 million people by 2027, underlines the need for better patient insights and patient enrollment strategies to ensure these trials meet enrollment targets.
In this blog we share the most critical patient insights and enrollment tactics we’ve leveraged to accelerate Sjogren’s syndrome patient recruitment. Our insights are based on a recent patient survey with 1800 Sjogren’s syndrome patients and our successful patient recruitment campaigns for 2 studies across 5 countries.
More specifically, this blog covers 4 ways to improve Sjogren’s syndrome study enrollment:
- Provide educational materials on treatment options, symptoms, and risk factors
- Optimize media budget by focusing on the right channels, and avoiding less popular ones
- Address patient-reported barriers to study participation
- Partner with an experienced and proven Sjogren’s syndrome patient recruitment provider
1. Educational materials that improve Sjogren’s syndrome study enrollment
Our Sjogren’s syndrome survey of 1,800+ patients revealed that most patients were unaware of the symptoms of their condition. Specifically, many patients indicated that they would be more inclined to enroll for a Sjogren’s syndrome study if they were better informed about the condition.
Using this, we asked patients to list what information would impact their decision to participate in a clinical trial most, below is an average of the international responses:
- Treatment options available (92% of responders)
- Symptoms of Sjogren’s syndrome (84% of responders)
- Risk factors of the condition (77% of responders)
To address these educational gaps, study organizers should include patient friendly information and educational materials within the study’s landing page and pre-screening phase, including:
- The symptoms of Sjogren’s syndrome
- How to identify which type of Sjogren’s syndrome a patient has
- Available treatments, but also what your treatment and study is trying to achieve
- The potential risk factors associated with your study
The impact of educational materials on trial registration rates
Clariness has experience in creating educational materials and patient-friendly study websites for hundreds of studies on a global scale. While we work from the principle that no two studies or patient populations are the same, we believe that overall, patient-friendly educational materials, in local language, can dramatically increase conversion rates. For example, in one of our recent Sjogren’s syndrome patient recruitment campaigns, we optimized study landing pages using lay-friendly information materials which improved conversion by 67%, allowing us to refer 133% more patients than originally planned.
Our Patient Insights, Medical, and Creatives team work together to create engaging content and study materials that boost patient understanding and thereby referrals and eventually, randomizations. If you would like to see examples of our educational materials, or see what can do for your study, please contact us.
2. Invest media budget in the right channels
We leverage 40+ digital channels, track conversions from offline channels (QR codes within study brochures for example), and partner with research sites, patient organizations, MedTech apps and more to drive referrals for Sjogren’s syndrome studies.
This channel performance data that we have gathered from supporting 1,200 studies across the globe, is categorized into population demographic, location, condition severity, and more, to make flexible, yet informed decisions on campaign channel strategy.
As soon as a patient recruitment campaign is launched, we use digital tracking tools to see which channels provide the best quantity and quality of referrals. We then reinvest in the highest performing channels and retain this knowledge for future studies, targeting similar indications and local patient populations.
However, to ensure optimum performance, before launching a patient recruitment campaign we recommend surveying patients to understand which channels they’re most likely to use to learn more about their condition, possible treatments, and clinical trials. Every indication and population is different, and our recent Sjogren’s syndrome survey of 1,800 patients showed three channels that we believe most trial organizers often ignore, or do not dedicate enough resources to. We have listed these below, and also the channels which >70% of respondents rarely use, if at all, to advise on which channels to invest more media budget in.
Online support groups and health websites
Our international Sjogren’s syndrome patient survey, and channel performance data from recent studies in other indications we’ve run, show that there’s a growing number of patients searching for medical information using online support groups and health websites.
Almost half of respondents in our Sjogren’s syndrome survey in fact reported using these channels to find information on their condition, and potential treatments:
- 48% of all respondents said they sometimes, or often, use online support groups
- 49% of global respondents said they sometimes, or often use, online health websites
- In the U.S., 68% of patients are using health websites
Partnering with online support groups and health websites therefore is a great way to raise awareness of their studies with its target population, and their friends and family whom are also researching the condition. We notice that patient organizations and online support groups are often more comfortable in partnering with Clariness, as our ClinLife platform is fundamentally neutral; sharing studies from various sponsors, and putting the patient central, instead of a sole trial organizer.
At Clariness, we partner with global health apps, websites, online support groups and forums to ensure we create awareness about clinical research and study participation and thereby drive referrals. We also leverage social listening tools, and have a team dedicated to engaging with potential participants, to address questions and concerns being raised within these online channels. This helps with debunking common clinical trial misconceptions and drives more traffic and engagement, which leads to increased referrals.
Engaging friends and family members of Sjogren’s syndrome patients
Some indications require us to advertise directly to the friends and family of patients, for example in patient recruitment for late-stage Alzheimer’s disease, where we would require a friend, family member, or caregiver to enroll and transport the patient for a study. Another example is our collaboration with kindergartens for pediatric studies on atopic dermatitis.
While patients with Sjogren’s syndrome are typically more independent than the example patients listed above, we still found that 149 of the respondents to the survey also had a friend or family member who had been diagnosed with the disease. This showcases that these key stakeholders are searching for information and happy to participate in surveys which further build awareness and enrollment of clinical trials. Based on our survey results, using this channel can increase our patient reach by 18%.
Less popular channels reportedly used by Sjogren’s syndrome patients
The channels being used rarely, if at all, as indicated by >70% of respondents in our Sjogren’s syndrome survey, include:
- Scientific journals
- In-person support groups
- Medical newspapers
- Public research authorities
- Sjogrens.org (or other country-specific equivalents)
If you are leveraging these channels, it is wise to limit the budget here and report on performance before investing too heavily in them.
As mentioned previously, Clariness has experience and channel performance data on a global scale, for Sjogren’s syndrome and 100+ other indications, and can better advise on which channels will yield the best results. To learn more about the 40+ channels we use across the globe, and which ones could provide better results for your Sjogren’s syndrome study, you can contact us here.
3. The 3 largest patient-reported participation barriers to Sjogren syndrome, and how to overcome them
In all our patient surveys, we ask if respondents would be willing to participate in a clinical trial. Respondents that match study criteria are immediately used for patient recruitment outreach when our campaigns go live. In our Sjogren’s syndrome survey, 30% of all respondents said they were willing to participate in a clinical trial and matched the study’s inclusion criteria. Surveys are not only a powerful tool for designing studies, but also create databases of suitable patients for outreaching at a later stage.
While the majority of our survey respondents were open to participating in a clinical trial, 45% of patients were unsure about participating in a Sjogren’s syndrome clinical trial. We asked patients to indicate the key reasons for this, and they reported:
- Fear of making their condition worse
- Travelling and time restrictions
- Concern about invasiveness of tests and possible side effects
Clariness has developed several tools and resources to address these and other concerns that potential participants may have when participating in clinical trials for Sjogren’s syndrome. When partnering with trusted sites and world-known sponsors, we address Sjogren’s syndrome patients’ concerns and ensure they will be well informed ahead of being referred.
Our in-house Enrollment Management Center (EMC), speaks directly with patients by telephone to further pre-qualify patients for the study’s criteria before referring, and are also trained to address participation concerns, including those referenced above. Speaking the local language of the patient, and explaining the benefits and solutions to concerns, improves enrollment rates.
In addition, we make sure to be transparent from the beginning and explain in a clear way the potential risks that could come with the study and treatment. By doing so, we avoid drop-out when the site explains these same risks when they arrive at their chosen study center. This improves consent rates and reduces site burden, by sending referrals that have been thoroughly pre-screen and are aware of what the study truly entails.
The demand for better treatments
Respondents of our Sjogren’s syndrome survey showed that there is an increasing demand for better treatment options for this condition. We asked them to rate their satisfaction in different categories, according to their current experience.
Respondents across all countries surveyed rated their current satisfaction as per below:
- Cost of treatment: 5.4/10
- Improvement to their quality of life: 4.8/10
- Overall satisfaction of current treatment: 5.6/10
These results show that while 45% of our Sjogren’s syndrome survey respondents were unsure if they would participate in a clinical trial, almost 100% are unsatisfied with their current treatments. This is a big opportunity to raise awareness of clinical trials, potential treatments, ease concerns and ultimately, dramatically increase enrollment for Sjogren’s syndrome patient recruitment.
Engage patients’ doctors to increase both direct and indirect referrals
While asking patients to rate their satisfaction of current treatments, we also asked them to rate their relationship with their doctors. We saw that on a global scale, patients are satisfied with their doctor, but not with their treatments. This suggests that patients trust and respect their doctors, and so when we provide medical practitioners with study materials such as study brochures, referral cards, and more, we further increase referrals.
At Clariness, we work with 7,000+ sites across the globe, and have dedicated teams creating doctor and patient-facing materials to increase awareness and drive study referrals. Our dedicated Enrollment Management Center works as an intermediary between patients and doctors, but also offers site support, which we have seen creates more direct and indirect patient referrals.
These indirect patient referrals are a result of increased site staff engagement with our team, it creates more awareness of the study, its inclusion and exclusion criteria, and brings the study to top of mind for site staff. This creates more advocates for the study, and we often see that sites working with Clariness provide more indirect referrals than those whom aren’t.
Want to learn more about how our Enrollment Management Center works with sites and increases direct and indirect referrals? Contact us.
4. Partner with a patient recruitment provider with Sjogren’s syndrome experience
As we have stated, recruiting for this condition can be especially hard due to the prevalence of Sjogren’s syndrome and the individualistic nature of its symptoms. Therefore, it is vital to understand all the possible barriers that may arise when reaching participants with this condition, and to work with experts who are already familiar with these barriers and know how to overcome them.
Our Patient Insight Manager, Richelle Morino, shares below the three main challenges Clariness has encountered when recruiting patients for this condition, these are:
- Most patients are unaware of which kind of Sjogren’s syndrome they have
- Some patients did not receive the formal medical documentation of their diagnosis, which was an inclusion criteria for our 2 recent studies
- This condition is much more common in women than in men, which means men aren’t typically as represented in Sjogren’s syndrome studies
How Clariness’ pre-screeners, EMC and digital campaigns overcome these challenges
Clariness’ pre-screeners are designed with medical and patient insight experts, to allow us to qualify not only if a patient has Sjogren’s syndrome, but those who are more likely to have the type of Sjogren’s syndrome that matches the studies’ criteria.
This is achieved through a series of patient-friendly questions, with visual aids to help patients self-assess their condition. We make sure to use inclusive imagery, that shows the varying symptoms that different patient populations would likely observe.
Within our pre-screeners, we also validate diagnoses, whether the patient has the correct documentation for the study ahead of visiting the site, and even the date the diagnosis was made.
The Enrollment Management Center is an in-house team dedicated to supporting both patients and sites and stay in constant contact with both parties. Speaking the local language of the patient, they will further qualify the suitability for the trial, confirming once again their symptoms, diagnosis and that they indeed have the right documentation to avoid frustrations at their local site.
Our digital recruitment campaigns leverage over 40 channels, and partnerships with health apps, patient organizations and more. Ensuring we have representative and diverse patient populations as a result of our patient recruitment, we select the channels and partnerships that will provide representation of both males and females. In fact, at the time of writing this blog, our consented patients equal that of the female to male prevalence ratio of 9:1, meaning we have true representation of the impacted population.
Clariness’ recent Sjogren’s syndrome successes
Increased enrollment rates, and doubled consented patients
The patient-reported insights we gathered from our Sjogren’s syndrome survey allowed us to develop patient-friendly campaign materials that speak directly to the patient’s problem and addressed the aforementioned participation concerns.
Leveraging these patient-reported insights, previous performance data, and our in-house medical and patient insights teams, we’ve overperformed ahead of schedule for both our recent Sjogren’s syndrome studies.
In one international Sjogren’s syndrome study, we began recruitment in 4 of the 8 countries in scope, and within 3 months, we have:
- Optimized our study landing pages to increase registrations by 67%
- Delivered +133% more site referrals than initially planned
- Almost doubled the original consented patients target
In a Sjogren’s syndrome study in Germany, working with only 2 sites, we:
- Trained sites and launched our campaign within 2 weeks of contract signature
- Generated referrals within the first week of our campaigning
- Secured page 1 organic Google results for our target keywords & phrases
- Surpassed referral rates, leading to enrollment targets being met ahead of schedule
How Clariness improves the patient experience
Everyone at Clariness is dedicated to improving patients’ lives by bringing new treatments and therapies to the market faster. The Enrollment Management Center encapsulates this best; in total, our EMC has spent 5 of the last 7 years speaking directly with patients on the phone.
This level of patient engagement, care, and focus, allows us not only to improve enrollment, but offer a great patient experience. The experience is so impactful that we often receive positive feedback on the recruitment campaign adverts themselves, in addition to the usual feedback loops such as site staff, exit surveys, and more.
The comment below from a real Sjogren’s syndrome patient is advocating for our service, as they were onsite with a rheumatologist within just one week of registering for the study. We have other social testimonials that can be read in our social media blog, but this is just one specifically for our recent Sjogren’s syndrome patient recruitment campaigns that speaks to our efficiency, and positive patient experience.
How we can improve your Sjogren’s syndrome study’s enrollment
You may be wondering how you can now take these insights and improve your study’s enrollment rates. As a summary of this blog, we would recommend:
- Survey both patients and sites to better understand the true drivers and blockers of enrollment – this can be done at the planning and recruitment stages of your study
- Educate your potential patients on available Sjogren’s syndrome treatments, symptoms of the condition, and be upfront about potential risks
- Address the key concerns of Sjogren’s syndrome in your study’s landing page – These being: Worsening their condition, travel and time restrictions, and concerns of side effects
- Invest more in online support groups and health websites for Sjogren’s syndrome – Communities are a strong driver of referrals
Our team, tools and insights, allow us to quickly scale Sjogren’s syndrome patient recruitment on a global level, with everything required to achieve improved enrollment already available to us. For more information on how Clariness can accelerate your Sjogren’s syndrome study, or the study of any other indication, please contact us.
Download our rare disease case study
In this case study, we look at 3 recent study successes for conditions with small patient populations, including:
- Bullous Pemphigoid
- Multiple myeloma
- Sjögren’s syndrome
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