EmicHealth

A research project is looking for male and female teens, ages 13-17 years, to assist with the development of Pinpoint, a brand new interactive mobile app that helps young Sickle Cell Disease (SCD) patients learn to assess, track, better understand and talk about the pain caused by this blood disorder.

If you have a child between the ages of 13-17 years old who has SCD, you and your child may be eligible to participate in this study sponsored by The National Institutes of Health.

Both parents and children will be asked to participate in the trial. Teens will be asked to use the Pinpoint app for up to 12 weeks and complete surveys about their experience. Parents will be asked to complete surveys as well.

The surveys will be conducted online, providing feedback on Pinpoint’s function, design, and meaningfulness. Because the sessions will be virtual, participants may reside anywhere as long as you and your child have internet access and either a tablet or smartphone.

For ethical reasons, we must first speak with the teens’ parent or legal guardian to enroll them in the study.

Usability Testing: seeking 14 teens ages 13-17 living anywhere in the United States who have been diagnosed with sickle cell disease. More...

Pinpoint RCT Study: seeking 100 teens ages 13-17 who have been diagnosed with sickle cell disease, and their parents, living anywhere in the United States. More...

Clinician Interviews: seeking 14 clinicians from anywhere in the United States who treat adolescent patients with sickle cell disease.

Share Your Personal Story: seeking up to ten (10) individuals of all ages who have sickle cell disease to share their personal sickle cell story in the Pinpoint app. More...

The Pinpoint Study has been IRB approved by WIRB and is in compliance with standards set by the National Institutes of Health (NIH). Certificate...