Case Study

TrackSMA: a digital health solution for rare disease

TrackSMA is a digital health solution that facilitates the capture of validated clinical assessments for spinal muscular atrophy (SMA).

The solution was developed by S3 Connected Health partnering with pharma leader, Biogen. It is currently deployed in the APAC region where it enables clinical teams to record and visualize patient progress and disease progression.

TrackSMA drives better insights on the management of patients and supports care teams to make more informed decisions on the treatment of patients.

TrackSMA condition case study
Biogen TrackSMA case study main

Spinal Muscular Atrophy

Spinal Muscular Atrophy (SMA) is a rare disease affecting the motor nerve cells in the spinal cord. It’s a debilitating condition that affects 1 per 8,000 to 10,000 people worldwide, impacting their ability to walk, eat, and breathe. SMA Type 1 represents an estimated 50% of all cases, for which life expectancy is less than 18 months without treatment.
In 2017, Biogen released Spinraza, the first FDA-approved therapy for SMA and the first of a new generation of gene therapies.

The drug positively impacts disease progression, and so clinicians need to understand patients’ trajectories before and following any treatment for the first time. Prior to Spinraza’s release, patients often had relatively little engagement with their neurologist and were more likely to see other members of the multidisciplinary care team who were associated with symptom mitigation.

Understanding the challenges of rare disease

With such low numbers, the challenges for detecting and treating a rare disease are different than more widespread chronic conditions, and so digital health solutions for rare disease must be tailored appropriately.

Due to the low prevalence of rare diseases, the required medical expertise is often concentrated in ‘centres of excellence’, meaning many patients are a considerable distance from the care they require. 

For those with limited mobility, this can be particularly challenging. The impact of this can range from delayed diagnosis, limited support programs, as well as impacting clinician’s oversight and understanding of the journey their patient is on.

Gathering longitudinal data and enabling it to be analyzed and visualized easily is crucial to improve access to and reimbursement for treatment, patient outcomes and disease research. This is where digital solutions can make a real difference to patients’ lives.

Gathering data that will help support individual patient reauthorization and demonstrating therapy effectiveness within a region for increased market access is important here. This means a lower chance of disruption to successful therapy for individual patients and the ability to help more patients in the region.


TrackSMA understanding research

Developing TrackSMA

Creating TrackSMA involved developing applications, a clinician portal, and the cloud-based data backbone of the solution, with a strong focus on UX design throughout.

The challenge was to prioritize the key requirements that would enable better provision and co-ordination of patient care rather than trying to create a tool that was too broad and overly complex, which would hamper not just development but adoption of the solution.

Our teams focused on several key areas to ensure a minimal viable product would be easily adopted by healthcare professionals; without their use and support of the solution, it could have no impact for patients.

TrackSMA’s secure clinician portal:

  • Developed using V1.0 of our cloud-based platform, Affinial

  • Facilitates gathering data on six validated clinical outcome assessments (eCOAs) covering local HCP requirements and patient population. S3 Connected Health negotiated global access with assessment test owners where required

  • Provides educational video training on individual assessment tests that promotes standardization for how the assessments are scored, aiding RWE collection

  • Grants access to patient records for members of their multi-disciplinary care teams, with tailored access for each type of healthcare professional

  • Shares patient information with treatment teams across multiple locations, reducing the divide for those farther from centers of excellence

  • Provides individual and group patient reports that include visual comparison and tracking of assessment scores

  • Enables the capture of multiple medications, not just Spinraza, increasing the value for patients and clinicians and encouraging greater use

  • Negotiated global access with assessment test owners where required

clinician tool S3CH

The cloud-based solution has been launched across APAC

TrackSMA was originally launched in South Korean and Taiwan in 2018, and was released in Hong Kong in 2021.

By effectively tracking disease progression, care teams can now unlock better insights, show patients’ progress over time, make better informed treatment decisions, and support access and reimbursement. They can also capture longitudinal disease data for research purposes, allowing a greater understanding of disease history and progression over time.


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