The following is a range of studies that have been beneficial for our families' Hereditary Alpha Tryptasemia Syndrome (HATS), co-morbidities, and other possible hereditary disorders.
Please note: This site does not monitor whether studies remain open, still accept patients or are completed.
Why should one participate in studies?
Participation in studies is clearly not for everyone. Benaroya Research's graphic to the right includes some reasons. For those with interest and flexibility, we feel participation offers a) the knowledge of helping others with similar disorders, b) the possibility of acquiring treatments that can improve disorders, c) at times, financial incentives and/or travel expenses, d) most importantly, building relationships with researchers who care about ones disorders.
NIH Allergy & Allergic Studies
If your test results indicate you have have more than 4 copies of a combination of alpha &/or beta TPSAB1, you may want to contact the NIH. The following research studies are occasionally open to HATS patients:
09-I-0086 - Screening Protocol for Genetic Diseases of Allergic Inflammation
10-I-0148 - Natural History of Atopic Dermatitis and Other Genetic/Congenital Diseases Associated with Allergic Inflammation
NIH Electrophysiologist Studies
To be added
LARKSPUR Fibromyalgia / Pain Study
Weill Cornell RB Protocol # 20-06022291
A study focusing on the Positive Affect as a Source of Resilience for Adults in Chronic Pain. LARKSPUR is an acronym for Lessons in Affect Regulation to Keep Stress and Pain UndeR control.
Rutgers Therapeutic Study
1st step, I-CORP program assessed experiences and thoughts on the current therapies used to manage your condition(s). Additionally, we would like to learn about how effective you feel your current treatments are and how you think they could be improved. This was designed to speak with 5 patients with mast cell activation syndrome (MCAS), 5 with mastocytosis, and 5 with hereditary alpha tryptasemia (HaT). See this link for more details.
The VIGOR Study
The Virtual Immersive Gaming to Optimize Reduction in Lower Back Pain study is a collaboration between Ohio State university, the National Institutes of Health, and Virginia Commonwealth University. It's ClinicalTrials.gov Identifier is NCT03463824.
To be added
NYU School of Medicine FAMiLI Study
The Food And Microbiome Longitudinal Investigation (FAMiLI) Study is managed to by the Division of Episemiology Department of Population Health. They are assessing how human microbiome and diet are related to various diseases, including cancer, heart disease, and diabetes.
How can one find a larger number of studies?
Search ClinicalTrials.gov for US searches (may include some international studies). At time of press, over 200 countries' studies are included in this database.
Graphics on this page are courtesy of each of the organizations noted.
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