INAME Supports SMA Research with 89% Verified Surveys

INAME’s first patient registry survey included 117 questions with complex logic, making it difficult for participants to complete in one sitting.

That challenge was especially important because most participants do not have access to computers and rely on mobile devices to complete patient registry surveys.

In the first phase of the registry project, INAME relied on Salesforce’s built-in surveys, which did not support save-and-resume functionality, among other issues. Participants who left before finishing had to restart from the beginning.

For a long research survey completed mainly on mobile, that created a clear risk: participants could lose progress, abandon the survey, or struggle to complete the registry.

The patient registry supports SMA research in Brazil, so INAME also needed a secure way to manage sensitive patient data, consent, and ethics requirements in Salesforce.

INAME implemented Titan Experience Studio to create patient registry surveys connected to Salesforce.

In the second phase of the registry project, INAME launched more advanced surveys with up to 300 questions and complex branching logic. These surveys have been running continuously since 2025.

Titan introduced save-and-resume functionality, allowing participants to complete long questionnaires over time without losing progress. Since most participants rely on mobile devices, the survey experience was optimized for mobile compatibility.

Consent and ethics requirements are built directly into the survey flow. Participants review privacy information and approve participation terms before continuing.

The surveys also include optional file uploads for genetic test verification, while keeping uploads voluntary to avoid participant drop-off.

Each response is connected to Salesforce in real time, helping INAME securely manage patient registry data throughout the research process.

89% of Long Patient Registry Surveys Verified
Around 887 of INAME’s 994 completed surveys include an attached and verified genetic test, giving the organization stronger data for SMA research in Brazil.

Save-and-Return for Long Surveys
Participants can save progress and return later, making long patient registry surveys more practical to complete on mobile devices.

Support for Privacy and Ethics Requirements
Consent steps, privacy information, and Salesforce-connected data capture help INAME manage sensitive research data in line with approval requirements and data privacy laws.

Complex Survey Logic
Titan supports the advanced branching and conditional logic INAME needed for large-scale patient registry surveys.

SMA Research Supported in Brazil
The patient registry surveys help support scientific research into the natural history of SMA and its development among Brazilians.

SMA Advocacy Supported in Brazil
The patient registry surveys help create real-world evidence about SMA to support advocacy for treatment access in Brazil.