Sjörgen’s syndrome Patient recruitment
We combine a thorough understanding of the patient population through surveys and patient Insights analysis with data-driven outreach methods
Sjörgen’s syndrome is a rare disorder of the immune system and rheumatic disease that is often accompanied by other immune system disorders, such as rheumatoid arthritis and lupus.
Although some scientists have argued that its not a text book definition of a rare disease meta-reviews of incidence studies show a high variety of prevalence estimates with ranges from 60 to 11 per 100.000 people.
This combined with the consistent proven difficulties organizers of Sjörgen’s syndrome Studies have with enrolling the required number of patients, it makes it one of the most challenging indications to recruit for. At Clariness we have a proven record for Sjörgen’s syndrome Recruitment.
Solving future challenges for clinical trials for Sjörgen’s syndrome
For a long time, pSS was considered an orphan disease, because on the one hand the very small patient population and on the other hand there was no therapy that was truly effective. For this reason, numerous largescale randomized clinical trials have been conducted in recent years, but for organizers as well as patient organizations, the results of these large-scale randomized clinical trials have generally been described as “truly disappointing.”
This year’s meta-reviews of the trial data point out, recent “thorough reflection on the negative data has reinforced the belief that the wide variability in clinical and biological phenotypes of patients with pSS makes it very unlikely that a single therapy will result in positive outcomes in all patients.” For this reason, future trials will focus more on various subtypes of a already very small patient population.
The key takeaway of this for study organizers is that this makes it essential to partner with patient recruitment specialists who have proven experience with Sjörgen syndrome and have a large patient database and pre-screening capabilities to reach out to as many Sjörgen Syndrome Patients as possible and make sure that they match the study requirements.
Sjörgen’s syndrome and minority patient recruitment
In the past years there have been an increasing number of initiatives in both Europe and the United States to boost awareness and thereby participation rates in clinical trials for Rheumatology, including Sjörgen Syndrome.
This was largely a reaction to incidence and prevelance studies showing that incidence and prevalence rates were:
- 6 times higher among women than men
- Incidence higher among Asian (10.5) and non-Latina White women (6.2) compared with Latina women (3.2)
- Incidence was also higher among non-Latina Asian women compared with non-Latina Black women (3.3).
- Incidence of Sjörgen Syndrome among Indian Americans is significantly higher
Our experience is our formula for success with patient recruitment
- 133% more patients enrolled than originally planned.
- 48% of all respondents to our pSS survey said they used online support groups
- 69% of our visitors for Sjörgen Syndrome recruitment come from non-paid channels
- 1800 patients participated in our most recent pSS survey (2022)
- 100% of pSS in our survey said to be unsatisfied with their current treatment
- 20% of our referrals were successfully randomized
Our digital targeting techniques
We have four ways of targeting patients and caregivers when performing migraine patient recruitment or migraine patient surveys, and continuously review performance to optimize engagement and trial registrations.
We reach pSS patients living in areas within a predesignated radius around sites. Depending on the trial protocol, we create a detailed patient profile and matching targeting method.
Patients searching or engaging (e.g., likes, shares, comments, etc.) with pSS symptoms (dry mouth) or treatments are shown study advertisements. At Clariness, we apply great importance to the representativeness of our advertising. We include images of people from different backgrounds.
Gender (women are 6 more likely to have pSS) ethnicity other demographics are used as filters to find patients (and their families and closed ones) most likely to qualify for the study protocol. Based on pre-screener data, this patient profile used in outreach campaigns is constantly updated. This way we are able to target group-specific barriers, from lack of trust in clinical science among minorities, to travel distance and understanding of difficulties in participating and health literacy of elderly patients.
We select from over 40+ possible digital channels the most cost-effective option and reach out to our large ClinLife database with a total of 1.3 million users worldwide, based on their location and the trial protocol inclusion and exclusion criteria. As a result from multiple largescale surveys for Sjörgen Syndrome we therefore have a large group of pSS patients in our database.
Are you designing a Sjogren’s syndrome clinical trial, or have one underway?
We can help you find the right patients, at the right time. To find out more about our Sjogren’s syndrome patient recruitment, contact us.