Twelve people with HPS or their direct family/caregivers are taking part in focus groups to help refine an HPS symptom scale tool. The tool is a collaboration of the National Institutes of Health and the HPS Network. It will help quantify which symptoms of HPS affect one’s quality of life the most through the progression of the disorder.
While if one is living with HPS it might seem obvious which symptoms are most impactful in day-to-day life, it’s helpful for researchers to have data to back up what they are anecdotally told by the community.
The tool will reflect the input of people with HPS as well as caregivers for people with HPS from childhood to adulthood. It will also include input from any HPS gene types.
The focus groups are helping researchers refine the tool. Once that is done, they will survey the entire HPS community. It will be vital to have maximum participation of the community during this step to make the tool, and the data, is most useful to researchers. Be on the lookout for invitations to participate in this project.
The project will not only help move research, but in the future it may prove useful when seeking FDA approval for a therapy.