Go to ClinicalTrials.gov to search for studies related to your disease. This database lists ongoing studies from around the world.
To learn about the autoinflammatory studies at the National Institutes of Health (NIH), click here.
STAIR Registry – HIDS/MA Registry
The Sterol & Isoprenoid Research Consortium (STAIR Consortium) is a collaboration of researchers around the world studying disorders that involve cholesterol and other sterol and isoprenoid metabolism. The autoinflammatory diseases hyper-IgD (HIDS) and mevalonate aciduria (MA), both mevalonate kinase deficiency diseases, are conditions that involved cholesterol production. The studies will lead to better understanding of these diseases, which should then lead to better treatment.
If you or your child have been diagnosed with HIDS or MA, you can register with the STAIR Registry to be contacted about studies you or your child may qualify for.
Autonomic Disorders Consortium
From our community groups, it has become apparent that some patients suffer from both autoinflammatory conditions and autonomic disorders, such as POTS. This is an area that needs more research. Registering with the Autonomic Disorders Consortium would put you in touch with these researchers. Click here to register.
Center for Rare Childhood Disorders – Genetic Studies
The Center for Rare Childhood Disorders, “is committed to developing, refining, and applying the latest tools of genomic medicine for the diagnosis and clinical management of patients.” If you or your child has a syndrome with possibly an unknown genetic cause, you can register here to to be considered for participation in research a the center.
To get notices of more future clinical trials, join the Autoinflammatory Alliance’s Facebook support groups.