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Published on April 7, 2026


The team from Dr. Eric Adler’s lab at UCSD has a new research project on Danon disease and we need your help!

Study overview from the UCSD team: As part of the study, we are collecting blood samples from individuals with Danon disease. This study will help researchers to better understand how human stem cells taken will react in laboratory experiments involving gene modification of the genetic mutation that causes Danon disease.

More information about the study: 

  • You may qualify if you have a positive diagnosis of Danon Disease.
  • Participants aged 18 years and older who qualify for the study will be asked to donate 6.76 tablespoons (100 mL) of blood for research purposes.
  • Participants aged 7 to 12 years old will be asked to donate blood which is a little over 3 tablespoons (50 mL) for research purposes, across two site visits.
  • Participants aged 13 to 17 years who weigh less than 110 lbs. will be asked to donate blood of a little over 3 tablespoons (50 mL).
  • Participants between 13 and 17 years who weigh more than 110 lbs. will be asked to donate 6.76 tablespoons (100mL) of blood.
  • You will be asked to take a decision-capacity test to assess your decision-making abilities before the study.

All expenses related to the study, including travel costs for you and an accompanying person will be covered; there is no cost to you. In addition, you will receive a $100 stipend for your participation.

For more info, contact the Study Coordinator, Eren Gunes at egunes@health.ucsd.edu.