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HPS Research Activities

 

Meeting of the Minds

This is an annual, invitation only, meeting of researchers interested in Hermansky-Pudlak syndrome, or who are working on research that might be important to HPS.

Dr. Seward’s summary of the 2022 Meeting

 

Externally-Led Patient-Focused Drug Development Meeting

This meeting was held June 10, 2022 and brought together representatives of the FDA, pharma and other interested parties to listen to the needs of the HPS community. The report that will come from this meeting will be used by the FDA and pharma to help analyze the risks vs benefits of future therapies. It was a chance for the HPS community to truly be heard by industry and government.

 

Current and Ongoing Studies

If you are interested in learning more about being a future research volunteer, please contact the HPS Network at:  info@hpsnetwork.org

 

Symptom Research

The National Institutes of Health and the HPS Network partnered to conduct a symptom scale study in 2022. The study was a survey that asked people with HPS or parents or partners of those with HPS, about their symptoms and how those symptoms impacted their lives.

 

Bleeding Research

In late 2022, the HPS Network recruited 12 volunteers to go to a lab in Pittsburgh to donate blood samples for research on a treatment for the bleeding of HPS. These pre-clinical studies are in progress.

 

Natural History Study

The National Institutes of Health is conducting an ongoing natural history study of Hermansky-Pudlak syndrome. The study will provide a better understanding of how HPS affects people. It also provides insights into how different types of HPS may vary. While not actively recruiting, those already enrolled continue to return to the National Institutes of Health for follow-up. To learn more about the study, contact the HPS Network at: info@hpsnetwork.org.

 

Biological Specimens

The National Institutes of Health has collected biological specimens from people with Hermansky-Pudlak syndrome. This includes DNA, blood, urine, tissue from biopsies or explants from transplantation. It also includes tissues from those who have passed away from the syndrome. To learn more about these specimens, contact the HPS Network at:  info@hpsnetwork.org.