FAQ – Frequently Asked Questions

What is the SCI Trials Finder?

The SCI Trials Finder matches people with spinal cord injuries and clinical trials. It helps people to easily locate, understand and participate in clinical trials that fit their situation.

What are the goals of the SCI Trials Finder?

We want to bring patients and clinical trials together and thereby help to accelerate the development of effective and safe treatments.

    We want to provide the community with a reliable resource platform that is easy to understand. We want to help investigators to find the right patients for their studies and reduce their administrative workload. And we want to provide scientists with statistics to help analyze clinical trials to make them better in the future.

      Who is it for?

      We’ve designed the SCI Trials Finder for several groups of people:

        • Patients, their families, friends and health care professionals who want to inform themselves about clinical trials for spinal cord injuries
        • Investigators who conduct clinical trials and search for patients who fit their study criteria
        • Investigators who want to set up a study or collaborate with other clinical studies
        • Analysts, researchers and funders

        Which trials are shown?

        In general, only trials are shown that are listed on the governmental database www.clinicaltrials.gov. There are other databases around the world but clinicaltrials.gov is the largest. We do not provide curations for private/unproven treatments, trials without ethical approval or trials which ask for money.

        What are curated trials?

        Curated trials are trials that have been selected, specified and rewritten in easy-to-understand language by our team of experienced clinicians and researchers, some of which who also live with a spinal cord injury.

        What do you do in detail to curate trials?

        Within the curation process, we:

          • Present key, clinical trial information in common language
          • Specify the eligibility requirements (inclusion/exclusion criteria)
          • When possible, provide missing information or clarify study criteria
          • Indicate where the study is being undertaken
          • Provide a direct link to contact the study investigator(s)

          Why are some trials curated and others not?

          There are a lot of clinical trials, and the accurate curation process takes time. We curate trials first that have a higher risk (e.g. stem cell trials) or be of high interest for the majority of patients (e.g. movement as functional outcome).

          I want to take part in a clinical trial. What do I need to know?

          Please have a look at this guide about clinical trials. Here you’ll find lots of valuable information on topics such as what makes a good clinical trial and what you should consider if you want to take part. A participation checklist is available in the guide.

          What is the ASIA impairment scale (AIS) classification?

          The American Spinal Injury Association Impairment Scale classifies five levels. They range from complete loss of neural function in the affected area to completely normal:

            • AIS A: complete; no feeling or movement below the injury
            • AIS B: incomplete; have some feeling, but no movement, below the injury
            • AIS C: incomplete; at least some feeling and mostly weak movement below the injury
            • AIS D: incomplete; at least some feeling and, some weak but mostly stronger movement below the injury
            • AIS E: all feeling or movement has returned to normal, as before the spinal cord injury.

            Do you store my data if I contact a study?

            No. We will send your inquiry through a secure form and will not store any of your personal data.

            How does the trial notification work?

            If you click on Notify Me, you’ll automatically receive an email when there is a new trial that fits your search criteria. You can change the search criteria or unsubscribe anytime.

            I’m a clinical investigator. Why is my trial not yet curated?

            Most likely, we have not yet had time to curate your trial. Please send us an email to carolyn@scope-sci.org and our team will look into this.

            My trial needs to be updated: How can I do this?

            Please send us an email to carolyn@scope-sci.org and our team will check and update the information.

            I want to analyze the clinical trials. Where can I find the data?

            Please click on “All trials”. You can then download all trials to analyze the meta data. If you need help or more information, please send us an email to carolyn@scope-sci.org .