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Participating in the IBMPFD Study

Please contact Sandra Donkervoort, MS via the information provided in the 'Contact Us' section of this site if you or someone you know is interested in participating in this study.

Release of medical records

We will ask your Doctor and/or your hospital for your medical records only with your written consent. This is to gather more information about your condition.

Sample Collection

Blood: Approximately two tablespoons will be required. There will be no charge to you or your insurance company for this testing.

Cheek swab: This sample and part of the blood sample is used for collection of DNA.

Urine: Urine will be obtained to test for markers which are raised in Paget disease of bone. There will be no charge to you or your insurance company for the cost of this testing.

Skin sample: If you chose to do so, you may be asked to submit a skin sample through a skin biopsy for further analysis of your condition.


A physical and neurological examination may be required.

Taking of a medical history

If you choose to participate, you will be asked to provide information about yourself, your children, siblings, grandparents, and possibly other members of your family. This information may include age, ethnic background, health status, and the biological relationship between individuals.


Contact Us

Sandra Donkervoort M.S.
Genetic Counselor Study Coordinator
(949) 824-0521; sdonkerv@uci..edu

Virginia Kimonis M.D.
Principal Investigator
(949) 824-0571; vkimonis@uci..edu