New drug shows promise in preventing hereditary swelling attacks
NCT ID NCT05392114
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study tests the long-term safety and effectiveness of donidalorsen, a drug given as a shot under the skin, to prevent attacks of hereditary angioedema (HAE). HAE causes sudden, painful swelling in various body parts. The trial involves 154 participants who previously completed an earlier study. Researchers will track side effects, how well the drug reduces attack frequency, and its impact on quality of life over an extended period.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
Active substance
donidalorsen (a drug injected under the skin to prevent swelling attacks)
What this could lead to
If successful, this could provide a new long-term option to prevent painful swelling attacks in people with hereditary angioedema, improving daily life.
What could go wrong
This is an open-label extension study, so there is no placebo group for comparison. Long-term safety and effectiveness are still being confirmed, and side effects may emerge over time.
Disclaimer
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This is a summary of
the original study
.
Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Locations
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Ionis Investigative Site
Paradise Valley, Arizona, 85253, United States
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Ionis Investigative Site
La Jolla, California, 92037, United States
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Ionis Investigative Site
Santa Monica, California, 90404, United States
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Ionis Investigative Site
Walnut Creek, California, 94598, United States
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Ionis Investigative Site
Tampa, Florida, 33613, United States
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Ionis Investigative Site
Kansas City, Kansas, 66103, United States
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Ionis Investigative Site
Boston, Massachusetts, 02114, United States
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Ionis Investigative Site
Ann Arbor, Michigan, 48109, United States
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Ionis Investigative Site
Detroit, Michigan, 48202, United States
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Ionis Investigative Site
St Louis, Missouri, 63141, United States
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Ionis Investigative Site
Mooresville, North Carolina, 28117, United States
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Ionis Investigative Site
Cincinnati, Ohio, 45236, United States
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Ionis Investigative Site
Columbus, Ohio, 43235, United States
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Ionis Investigative Site
Hershey, Pennsylvania, 17033, United States
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Ionis Investigative Site
Dallas, Texas, 75231, United States
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Ionis Investigative Site
Murray, Utah, 84107, United States
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Ionis Investigative Site
Edegem, 2650, Belgium
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Ionis Investigative Site
Sofia, 1431, Bulgaria
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Ionis Investigative Site
Sofia, 1680, Bulgaria
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Ionis Investigative Site
Ottawa, Ontario, K1H 1E4, Canada
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Ionis Investigative Site
Edmonton, AB T6G 1Z1, Canada
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Ionis Investigative Site
La Tronche, 38700, France
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Ionis Investigative Site
Marseille, 13385, France
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Ionis Investigative Site
Paris, 75012, France
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Ionis Investigative Site
Berlin, 12203, Germany
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Ionis Investigative Site
Frankfurt, 60590, Germany
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Ionis Investigative Site
München, 81675, Germany
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Ionis Investigative Site
Ashkelon, 7830604, Israel
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Ionis Investigative Site
Haifa, 3104802, Israel
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Ionis Investigative Site
Tel Aviv, 6423906, Israel
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Ionis Investigative Site
Catania, 95123, Italy
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Ionis Investigative Site
Naples, 80131, Italy
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Ionis Investigative Site
Padova, 35128, Italy
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Ionis Investigative Site
Palermo, 90146, Italy
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Ionis Investigative Site
San Donato Milanese, 20097, Italy
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Ionis Investigative Site
Amsterdam, 1105, Netherlands
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Ionis Investigative Site
Groningen, 9713 AP, Netherlands
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Ionis Investigative Site
Krakow, 31-501, Poland
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Ionis Investigative Site
San Juan, PR 00927, Puerto Rico
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Ionis Investigative Site
Barcelona, 08035, Spain
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Ionis Investigative Site
Barcelona, 08907, Spain
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Ionis Investigative Site
Madrid, 28046, Spain
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Ionis Investigative Site
Seville, 41013, Spain
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Ionis Investigative Site
Valencia, 46026, Spain
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Ionis Investigative Site
Altındağ, 06230, Turkey (Türkiye)
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Ionis Investigative Site
Bornova, 35100, Turkey (Türkiye)
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Ionis Investigative Site
Istanbul, 34093, Turkey (Türkiye)
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Ionis Investigative Site
Birmingham, B9 5SS, United Kingdom
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Ionis Investigative Site
Bristol, BS10 5NB, United Kingdom
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Ionis Investigative Site
London, E1 2ES, United Kingdom