Children and Adults Needed for Bone Disease Study
M
Michael Econs, MD
Primary Investigator
Recruiting
1-100 years
All
Phase
N/A
150 participants needed
1 Location
Brief description of study
What is this study about?
Physicians at Indiana University want to learn more about Osteopetrosis, especially Autosomal Dominant Osteopetrosis. Osteopetrosis is a rare metabolic bone disease that can cause hard bones that can break easily. Not enough is known about osteopetrosis.
Our researchers want to learn more about this disease so that we may:
- Define the severity of the disease
- Identify what causes the differences in how people are affected
- Gain knowledge that will help in designing treatment studies in the future
Who can take part?
Children and adults who have Osteopetrosis OR who are healthy without bone disease.
Study Contact for More Information:
Corinne Parks-Schenck
Phone: (317) 948-2601
Email: cparkssc@iu.edu
Detailed description of study
What is involved during study participation?
If you have osteopetrosis or a family member with osteopetrosis:
- Study visits will occur once a year for 5 years in-person with 6 month updated phone calls
- There are 2 levels or tiers of study participation to choose from: Tier 1 and Tier 2
- Tier 1 participation (biological sample testing) includes a brief physical exam, measurement of vital signs, collection of health information, blood and urine samples, and possibly a cheek swab for genetic testing.
- Tier 2 includes yearly visits for 3 years with all of the above + physical testing (imaging of your bones with x-rays & different kinds of CTs, a DXA scan (for bone density) and physical function test down through our partner study, Musculoskeletal Function, Imaging and Tissue (FIT) Resource Core).
If you are a healthy volunteer without osteopetrosis or a family member with osteopetrosis:
- You will be asked to donate a blood sample
Additional Information
Study title: Autosomal Dominant Osteopetrosis: A Natural History Study
Some costs of travel to the study site may be reimbursed through the study.
Eligibility of study
You may be eligible for this study if you meet the following criteria:
- Conditions: Healthy, Osteopetrosis, Marble Bone disease, Albers-Schonberg disease
-
Age: Between 1 Years - 100 Years
-
Gender: All
Inclusion Criteria:
- Diagnosis of osteopetrosis, or a family member of someone affected by osteopetrosis
- Healthy adults without osteopetrosis
Updated on
01 Aug 2024.
Study ID: 1907216574
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What happens next?
- You can expect the study team to contact you via email or phone in the next few days.
- Sign up as volunteer to help accelerate the development of new treatments and to get notified about similar trials.
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