Natural History Study Status Update

Med-Life Discoveries LP (MLD) takes the health and safety of patients with RCDP and their families very seriously. While we appreciate that this community is always vigilant in protecting their children from infectious diseases, the emergence of the novel coronavirus (Covid-19) certainly increases the need for caution. We are currently closely monitoring the development of this situation and the guidance of the World Health Organization (WHO), Centers for Disease Control (CDC) and local Public Health authorities, and will modify our trial designs and plans according to these recommendations as they continue to evolve.

At this point there are no scheduled clinic visits in the RCDP Natural History Study for the next month. We intend to use the coming weeks to evaluate how to proceed with the study and what modifications, if any, will be required. The Nemours/Alfred I duPont Hospital for Children, the clinical site for this study, is currently performing clinical visits as scheduled. We understand that one of the biggest concerns for families are the risks associated with traveling to the clinical hospital. We fully support any families that wish to reschedule their appointments and will work with them to make alternate arrangements.  Given the uncertain and ever-evolving response to Covid-19, we encourage families with clinic visits in the coming months to maintain those appointments. Whether it is reasonable to attend those appointment can be finalized at a future date. Please note that clinic visits can be cancelled with very little notice, up to the day of the appointment. Making travel arrangements for these visits should however be postponed or done with caution, to ensure there are no concerns with cancellations.

Please know that MLD is committed to monitoring the situation and acting in the best interest of patients with RCDP. We will continue to share updates on the status of the natural history study. Should you have any questions about your appointments please reach out to your clinical research contact.