Referrals to the Primary Dyskinesia Center
Referral to an accredited center such as University Hospitals Rainbow Babies & Children’s Hospital’s Primary Dyskinesia Center is an important step in getting an accurate diagnosis of PCD. Children or adults who are experiencing certain respiratory symptoms or other issues may be good candidates for further testing.
Communication with the referring physician is very important to our team. We follow up with the pediatrician, primary care physician or specialist in order to keep them informed about their patient’s condition, updating them on any test results or diagnosis as needed.
To refer a patient to our center, please call 216-844-3267.
When to Refer
We suggest that a patient be referred to University Hospitals Rainbow Babies & Children’s Hospital’s Primary Ciliary Dyskinesia Center for testing and diagnosis if two out of these four characteristics are present:
- Heterotaxy (organs formed on the opposite side of the body)
- Newborn respiratory distress and oxygen requirement without a clear reason
- Daily runny nose since the first year of life
- Daily cough since the first year of life
Also, adults with unexplained bronchiectasis should be evaluated, with a particular focus on nasal nitric oxide testing.
Information for Referral
Please have the following information available when referring in order to help expedite the process:
- Patient's name and information
- Patient's health insurance carrier and contact information
- Patient’s insurance ID and plan information
- Medical diagnosis
- Current provider’s name and information
- Copies of previous diagnostics tests such as genetic evaluation and ciliary biopsy
Journal Article on PCD
The following clinical study on PCD was published in Pediatric Pulmonology in 2015:
- Diagnosis, Monitoring and Treatment of Primary Ciliary Dyskinesia: PCD Foundation Consensus Recommendations Based on State of the Art Review
More information on PCD can be found on these websites: