Is your child living with osteogenesis imperfecta (OI)?

If your child has osteogenesis imperfecta, they may be eligible to participate in a clinical study looking to determine if an investigational medication may limit the number of bone fractures they experience.
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What is the Purpose of This Clinical Study?

The purpose of this study is to evaluate whether an investigational medication may help reduce bone fractures.

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 child choose to continue with screening for the study.

Check your child’s eligibility

Support for Parents and Legal Guardians

If your child has osteogenesis imperfecta, you can complete the questionnaire for the study on their behalf by clicking the button below. Please enter your contact information so we can follow up with you about the study.

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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, “You will be followed by a physician from the site during the study period.” 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. It's like a science experiment for Ol.
Protocol: the rulebook for the study that doctors and nurses follow.
Informed Consent: a document that you and your parent review and sign with the doctor prior to beginning the study.
Research Site: The hospital or clinic where you’ll visit doctors who are experts in OI.

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's medical history to determine their eligibility.

Step 2: Speak With a Research Site

You and your child will meet the research team who will review their relevant medical records.

If the research team thinks your child 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 3: Study Participation

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

If your child is enrolled in the study, you should expect the following:
  • They could be placed into one of two groups: one group receives an investigational medication once a month for 12 months and one group will receive standard-of-care treatment. 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.
I'm Interested

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.
How often will my child 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 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.

Patient inclusion in this trial is not guaranteed by PatientWing. PatientWing refers patients to sites but does not conduct the trial itself. Study inclusion will be carried out by a center authorized to conduct the trial concerned.