Is your child or loved one living with osteogenesis imperfecta (OI)?

If your child or teen is between 5 to 17 years old, they may be eligible to participate in a clinical study evaluating an investigational medication for osteogenesis imperfecta.
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What is the Purpose of This Clinical Study?

The purpose of this phase III study is to determine whether the investigational medication, romosozumab, may help prevent bone fractures and impact bone density in children and teens with osteogenesis imperfecta (OI).

Can My Child Participate?

Children and teens may be eligible to participate in this study if they:

Are between 5 and 17 years old*
*If you are under 18 years old, your legal guardian must complete the questionnaire for you. PatientWing does not allow or accept questionnaires from anyone under the age of 18.
Have a confirmed diagnosis of osteogenesis imperfecta (OI) type I, III, or IV
Have had one of the following:
  • 3 or more fractures within the last 2 years
  • 1 or more nonvertebral fractures (e.g.: arm, leg, wrist) within the last 2 years and at least 1 vertebral fracture
  • 2 or more vertebral fractures
Are able to occasionally walk on their own or with assistance

Other eligibility criteria apply and will be evaluated by a study doctor if you and your loved one choose to continue with screening for the study.

Check your child’s eligibility

Why Should We Consider This Clinical Study?

Participation in this study may provide useful information on osteogenesis imperfecta by helping researchers understand whether romosozumab may help build stronger bones and reduce fractures in children and teens.

By enrolling in this Phase III study, participants may receive:

Access to expert physicians with experience managing osteogenesis imperfecta (OI).

Reasonable reimbursement for parking and travel if qualified for the study.

The study required procedures and investigational medication provided at no cost.

Get Started
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How to Explain a Clinical Study to
Your Child

When preparing your child for a clinical research study, it’s helpful to approach the conversation much like you would when explaining a medical treatment. Use simple, age-appropriate language so your child can understand what to expect. For younger children, visuals can be especially helpful—consider drawing or showing pictures that walk through a procedure to make the process feel more familiar and less intimidating.

If your child hasn’t had much experience with medical visits, introducing them to images of doctors, nurses, or a hospital setting can also ease anxiety and help them see that medical professionals are there to help and care for them.

It’s also a good idea to explain why the research matters. You might say something like, “This medicine could help make your bones stronger,” or, “By being part of this study, you’re helping doctors learn more about OI for the future.” Keep the conversation open; encourage your child to ask questions, express their feelings, and share any concerns.

And remember, the study team is there to support you, too. They may have helpful resources designed for children and families like you.

Important Clinical Study Terms

Here are some terms that may be helpful to discuss with your child.

Clinical study: a type of study where doctors test medications to make sure they are safe and help people. It's like a science experiment to find the best treatments for OI.
Protocol: the rulebook for the study that doctors and nurses follow to keep you safe.
Informed Consent: a document that you and your parent review and sign with the doctor prior to beginning the study.
Research Site: The special place (like a hospital or clinic) where you’ll visit doctors who are experts in OI. They’ll give you a checkup, share some medicine with you, and make sure you’re doing okay.

What Should We Expect?

Step 1: Submit an Online Questionnaire

This questionnaire will ask for a legal guardian’s contact information and a few questions about your child or loved one’s medical history to determine their eligibility.  

Then, select a time for a short phone call with PatientWing. Submitting the questionnaire is voluntary and does not require a commitment to participate in the study.  

Step 2: Speak With PatientWing

PatientWing is helping to identify potential individuals who may be interested in this osteogenesis imperfecta study.

You will have a short call with PatientWing to answer additional questions about your child or loved one’s medical history.

Step 3: Speak With a Research Site

After your conversation with PatientWing, you and your child or loved one will meet the research team who will review their relevant medical records.

If the research team thinks your child or loved one may be eligible to participate, they will schedule a screening visit.

The research team will provide more information during your conversation with them. No question is a bad question so please share any concerns with the team!

Step 4: Study Participation

After your child or loved one has completed the screening period, the research team will notify you both about their eligibility.

If your child or loved one is enrolled in the study, you should expect the following:
  • They could be placed into one of two groups: one group receives romosozumab once a month for 12 months and one group will receive standard-of-care treatment with bisphosphonate. The standard of care treatment is a regimen which will be selected by the study doctor.

    They will visit the study site up to 17 times and you may join them for each visit. There is also the option of at-home visits which may make it easier for your child to potentially participate.
  • Reasonable reimbursement for parking and travel may be provided if qualified for the study.
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Have Questions?

At PatientWing, we’re here to support you at every step of the study. You can email or fill out the form with any questions. We’re here to help.

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Frequently Asked Questions

How do I get started?
Fill out the questionnaire and provide basic information to express interest in the study. You can also email studies@patientwing.com or call 213-459-2979.
How often will my child or loved one need to visit the research site?
There will be around 17 visits to the research site during the study period.
How long will the study take place?
Your child’s participation may be about 16.5 months. The screening period (this is the period before beginning treatment) is up to 35 days. The treatment period is about 12 months, and then there is a 3-month safety follow up period.
Are there any at-home nursing/visit options?
Yes. There is the option of having some visits at home by a qualified health care professional. The research team will provide more details about this option.
Why didn’t my child/loved one qualify?
Research studies are designed in specific ways to test the investigational medication for safety and effectiveness. An answer provided was outside the guidelines for participating in this study. This does not mean they will not qualify for other or future research studies.