Clinical research represents a crucial pathway to discovering new therapies and improving outcomes in spinal cord injury (SCI), but many patients are unaware of available trials, unable to navigate existing databases, or discouraged by the complexity of eligibility requirements. Despite the dramatic growth in SCI research, and the wide availability of online resources, people disabled by SCI face a daunting prospect in their search for clinical trials, while researchers report persistent challenges in recruiting eligible candidates (1–3).
To help individuals seeking avenues to recovery connect with available research opportunities, organizations in the SCI community partnered to develop SCI Trials Finder https://scitrialsfinder.net, an innovative online tool aimed at facilitating this process for individuals and their caregivers. SCI Trials Finder was the topic of the Jayanthi Award Lectureship at the Academy of Spinal Cord Injury Professionals’ 2024 annual conference. An interdisciplinary panel provided an in-depth look at how the platform was developed and implemented, their perspective on current usage, and the potential for SCI Trial Finder to benefit all stakeholders in the SCI community (4).
Because SCI research is highly specialized and conducted at multiple centers around the world, a tailored approach is needed to match patients with appropriate studies. While traditional resources like ClinicalTrials.gov provide an extensive listing of studies, navigating them is difficult for consumers, especially for individuals with complex clinical conditions such as SCI. Searches will yield trials that are completed or inactive, often information is missing and there is a lack of consistency in how trials are categorized, including their criteria and descriptions of injury characteristics (5, 6).
To facilitate the search process, SCI Trials Finder provides clear, concise descriptions of each trial, using common language. Information can be translated into different languages using Google Translate. In addition to the database being regularly updated, trials are curated on an ongoing basis by a multidisciplinary Expert Curation Committee, a unique feature of the tool. Compared with more than 500,000 studies on ClinicalTrials.gov. SCI Trials Finder’s database contains approximately 1,500 trials relevant to SCI research. These can be filtered to meet patients’ needs, i.e., those that are actively recruiting, interventional, and neurorestorative, which currently number around 225 (4, 5).
SCI Trials Finder allows users to input specific details about their injury, such as the level, severity, and completeness, time since injury, and other factors that could influence eligibility for a trial. The tool then generates a list of clinical trials that offer viable opportunities for participation. When an individual decides to explore their eligibility, they are connected to the trial via a secure form, eliminating the time and effort needed to locate the right recruitment specialist.
Users can also request to be notified of new research opportunities, an important feature that benefits both patients and researchers. To ensure privacy and security, personal data are only maintained for individuals who enroll in a trial.
In addition, the website offers educational resources to help users better understand the clinical trial process, including explanations of trial phases, what to expect as a participant, and how to evaluate the risks and benefits of participating in a study (7).
As of September 2024, more than 1,000 inquiries had been submitted to SCI Trials Finder, (4) providing a perspective on what patients are prioritizing in terms of their goals for recovery (8–10). This information may be useful in predicting the feasibility of recruitment for future clinical trials.
Quarterly usage reports rank inquiries by primary interventions and desired benefits (4). To date, inquiries most commonly specify technology applications, rehabilitation, drug and cellular interventions, and surgery. The most sought potential benefits include the ability to stand/walk, better arm and hand function, and improved general health.
By breaking down barriers to trial access and making the process more transparent and navigable, SCI Trials Finder has the potential to transform the clinical trial experience and accelerate the development of much-needed therapies for SCI. The impact of SCITrialFinder.net will continue to grow as more patients, caregivers, and clinicians become aware of this resource, and researchers see the benefits of more targeted recruitment efforts. We encourage the community to not only utilize the SCI Trials Finder but also contribute to its ongoing improvement and outreach.
To learn more about SCI Trials Finder and the work of the Expert Curation Committee, visit https://scitrialsfinder.net/
References
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