Retention a problem in clinical trials for retinitis pigmentosa

Due to the slow progression of retinitis pigmentosa (RP) a long follow-up period is needed in clinical trials focused on RP, which can be challenging, according to a study.

Optimizing tele-visits and increasing communication are potential strategies that may help facilitate retention.

In a crowdsourcing survey answered by 1473 adult patients with RP, 79% of respondents said that were very/somewhat enthusiastic about participation, of which 80.6% said they were “very willing” to attend clinic visits every 4-5 months for 45 months. Most patients (90.3%) said they were “very willing” to have tele-visits.

Of all the respondents, more than 95% use email or a cell phone and receive text messages; 64.7% said they would receive text message reminders to take medication and 77.1% said they were willing to receive messages surveying missed doses.

Reference
Kong X, Dorfman C, Trotochaud S, et al. Using crowdsourcing to understand patients attitudes toward a clinical trial for retinitis pigmentosa requiring 4 years of participation. Ophthalmic Genet. 2021;doi: 10.1080/13816810.2021.1961282. Epub ahead of print. PMID: 34380366.