A Long-term Extension Study to Assess the Long-term Safety and Efficacy of Pegtibatinase Treatment in Participants ≥5 to ≤65 Years of Age With Classical Homocystinuria (HCU) (ENSEMBLE)
This study, called ENSEMBLE, is investigating a medicine named pegtibatinase for a condition called Homocystinuria (HCU). It's a long-term study checking the safety and how well pegtibatinase works in people aged 5 to 65. Participants will be those who are already taking part in a previous pegtibatinase study (COMPOSE) or have finished 24 weeks of treatment in another study (HARMONY). The main goal is to keep track of patients over an extended period to understand the full effects of the treatment. This helps researchers gather important information about this new medicine as a potential long-term option for HCU.
At a glance
What is this study about?
This study, called ENSEMBLE, is looking into a medication named pegtibatinase. It’s designed for people who have a rare genetic condition called Homocystinuria, often shortened to HCU. This condition affects how the body breaks down certain proteins, leading to a build-up of harmful substances. Researchers are interested in seeing how safe and effective pegtibatinase is as a long-term treatment for those with HCU.
Since this is an 'extension' study, it means that the people who can join have already been part of an earlier study looking at the same medication. By continuing to follow these participants for a longer time, the researchers can gather much more information about the treatment's effects. This includes understanding if the benefits continue over many years and if there are any long-term side effects.
The information gathered from this study is very important because it helps scientists and doctors understand if pegtibatinase could be a valuable and safe treatment option for people with HCU for a considerable period. This is a crucial step in developing new medicines that can genuinely improve the lives of patients.
Key takeaways
- Study for Homocystinuria (HCU) patients aged 5-65.
- Investigates the long-term safety and effectiveness of pegtibatinase.
- Only for those already in specific previous pegtibatinase studies.
- Involves regular medication (self-administered) and health checks over 2 years.
- Helps understand if pegtibatinase is a good long-term HCU treatment.
- Participation is voluntary, and you can withdraw anytime.
Who may be eligible?
To be able to join this study, you must be between 5 and 65 years old. The study is specifically for people who are already taking part in another study called COMPOSE investigating pegtibatinase. Alternatively, you can join if you have completed 24 weeks of treatment in the HARMONY study, which also looked at pegtibatinase or a placebo.
Unfortunately, you cannot join this particular study if you had to stop an earlier pegtibatinase study because of a serious side effect or if your body couldn't tolerate the treatment. This is to ensure the safety of participants already known to have had difficulties with the medication.
Both males and females are welcome to participate, as long as they meet the other criteria. The researchers want to get a broad understanding of how the treatment works across different people.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Are you between 5 and 65 years old?
- Are you currently in the COMPOSE study or have you finished the 24-week treatment part of the HARMONY study?
- Have you NOT had to stop a previous pegtibatinase study due to serious side effects or intolerance?
- Are you willing and able to potentially self-administer medication?
What does participation involve?
If you join this study, you could be involved for at least 108 weeks, which is about two years. This period includes up to 104 weeks where you'll be taking the pegtibatinase medication. After you stop taking the medicine, there will be a 4-week follow-up period to check on your health and safety.
Most participants will give themselves the pegtibatinase injections, unless there's a good reason why they can't. Throughout the study, doctors will take blood samples to see how the medication is moving through your body. There's also an extra, optional part of the study (called a 'sub-study') that some people might be able to join, which looks at how much protein you can eat while on the treatment. This is an 'open-label' study, meaning everyone involved, including you and your doctors, will know you are receiving pegtibatinase.
Potential risks and benefits
Locations (52)
- Phoenix Children's HospitalVerified postcodePhoenix, United States
- Yale University School of MedicineVerified postcodeNew Haven, United States
- Emory UniversityVerified postcodeAtlanta, United States
- Ann & Robert H. Lurie Children's Hospital of ChicagoVerified postcodeChicago, United States
- Maine Health Pediatric Specialty CareVerified postcodePortland, United States
- Uncommon CuresVerified postcodeChevy Chase, United States
- Icahn School of Medicine at Mount SinaiVerified postcodeNew York, United States
- Science 37 - Virtual SiteVerified postcodeMorrisville, United States
- Oregon Health and Science UniversityVerified postcodePortland, United States
- The Children's Hospital of PhiladelphiaVerified postcodePhiladelphia, United States
- University of Pittsburgh Medical Center - Children's Hospital of PittsburghVerified postcodePittsburgh, United States
- University of Texas Southwestern Medical CenterVerified postcodeDallas, United States
Common questions
What is Homocystinuria (HCU)?
Homocystinuria is a rare inherited condition that affects how your body processes certain proteins, leading to a build-up of a harmful substance called homocysteine.
What is pegtibatinase?
Pegtibatinase is the name of the new medication being studied for its potential to treat Homocystinuria.
How long will I be in the study?
You will be in the study for at least 108 weeks, which is just over two years. This includes taking the medication and a follow-up period.
Do I have to give myself the medicine?
Most participants will learn to give themselves the pegtibatinase injections at home, but exceptions can be made if needed.
Can I stop participating if I want to?
Yes, you have the right to leave the study at any time, for any reason, and it won't affect your ongoing medical care.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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