Social media engagement boosts rare disease outreach
Social media has become an excellent tool for targeting specific patients for clinical trials, says Chris Adams, the CEO at Andarix Pharmaceuticals, a biotech developing targeted oncology therapies.
Adams was speaking at the Outsourcing in Clinical Trials conference in Boston, New England, being held 23 – 24 October, where experts discussed challenges and strategies surrounding clinical trial operations.
Adams spoke about how Andarix is using a software called PRISM to use social media to target specific individuals with rare diseases. Social media can help overcome challenges related to patient geographic dispersal, and raises awareness of the trial, said Adams. He added that using this alongside the company’s work with patient advocacy groups and registries, Andarix has achieved a 40% response rate. “As you know, if you send out 100 queries today in a survey, you will usually get maybe 3-4% response rate, so this speaks the fact that these people [rare disease patients] are very motivated so that image takes control of social media application,” said the CEO.
However, Adams cautioned against the potential spread of misinformation. At times, some people can use the information on clinical trials being shared on social media and misconstrue certain aspects of the study, he said.
Adams also recommended leveraging the patient registries and databases, to connect with patients for clinical trials. “These registries have gotten so good that you can now look at how many times the patient went to the doctor, what doctor they go to, were they in a certain geographic area, and what kind of tests they took,” he said.
Notable registries include the IAMRARE program from the National Organization for Rare Disorders (NORD), the Coordination of Rare Diseases at Stanford (CoRDS), and the Rare Diseases Clinical Research Network (RDCRN), which is overseen by the National Institutes for Health, listed Adams. He added that registries from specific companies can be useful resources, referencing Sanofi’s Rare Disease Registries which records information about rare conditions such as Gaucher disease, Fabry disease, and Pompe disease.
