Researchers from the Rare Diseases Clinical Research Network (RDCRN) are looking for input from patients to better understand how COVID-19 is impacting the rare diseases community. As a partner patient advocacy group of the RDCRN for the past 15 years (through the GDMCC–Genetic Disorders of Mucociliary Clearance research consortium), the PCD Foundation strongly supports this effort and wants to ensure that the voice of the PCD community is open.
This initiative includes a brief survey and is open to any patient with PCD or suspected PCD and/or their caregivers. Please read the following letter from the principle investigator at Cincinnati Children’s Hospital, Dr. Macaluso, and consider participting if you can. All responses are anonymous. More details can be found at the links below.
Thank you so much for considering participation in this important initiative and others to follow shortly.
May 11, 2020
I am writing to inform you about a research study currently being done by the Rare Diseases Clinical Research Network (RDCRN), which is supported by the National Institutes of Health (NIH). We are aware that the novel coronavirus pandemic can have a serious impact on people with rare diseases and their families. Yet, not much is known about it. We want to learn from you and hope that you are willing to share your experience.
You may have received this email from one of the consortia that do clinical research in the RDCRN, or one of the patient advocacy groups that work hand in hand with consortia as part of the RDCRN. The RDCRN’s Data Management and Coordinating Center at Cincinnati Children’s Hospital Medical Center is coordinating this project. We are asking people who have previously been diagnosed with a rare disease to take part in a research study called, “Impact of COVID-19 on People Living with Rare Diseases and Their Families.” The study is a survey and should take approximately 20 minutes to complete.
If you choose to take part in this study, we will keep your responses confidential and store them on secure research servers. You may withdraw from the study at any time before you submit your responses. Once submitted, your responses cannot be withdrawn.
Your participation in this research is completely voluntary and will not affect your current or future medical care. If you have any questions or would prefer to not be contacted in the future about participation in this research study, please contact the study team at firstname.lastname@example.org.
Please click here to learn more about the survey and decide if you would like to participate: https://RareDiseasesNetwork.org/COVIDsurvey.
Thank you for considering to take part in this important survey.
Maurizio Macaluso, MD, DrPH, FACE
Professor of Pediatrics, University of Cincinnati College of Medicine
Director, Division of Biostatistics and Epidemiology
Cincinnati Children’s Hospital Medical Center
Co-Principal Investigator, Data Management and Coordinating Center
Rare Diseases Clinical Research Network
3333 Burnet Avenue, MLC 5041
Cincinnati, OH 45229-3039