Participation in the Natural History Study is critical for the success of this program! The RCDP community is small, so we hope to reach out to most of the families directly. The current goal is to begin enrolling patients into the Natural History study in the first half of 2019.
Participating in the study will require parents to complete several questionnaires and RCDP children to undergo several assessments over the period of a year. Some of these assessments will need to be completed by Dr. Bober's team at the Alfred I. Dupont Hospital for Children in Wilmington Delaware, while other assessments can be completed in a home setting. The final list of assessments is still being finalized, but will include relatively non-invasive procedures such blood tests, range of motion testing, GI functional tests, growth measurements, and filling out questionnaires.
If you are willing to participate, THANK-YOU! We will also be performing several pilot studies over the coming months and will need volunteers to help us out. For information on participating, please fill out the form below. You will then be contacted with more information regarding the study, consent process, and other details.