Rare Lung Diseases Program

 

If a family member makes the initial contact with us, our team will call the child’s physician to confirm the referral.  Before setting up the first appointment, we will work with families and referring physicians to obtain a patient summary, copies of laboratory and radiology films and reports, and lung biopsy slides. This allows us to plan the first appointment and recommend tests and additional consultations if needed.

 

 

You can help expedite the referral process by working with your child’s physician to organize his medical records. We often request the following records:

• Referral letter
• Notes from your pediatrician or primary care provider
• Office notes and consultations from other physicians involved in your child’s medical care, particularly pulmonary physicians
• Bronchoscopy reports
• Hospital discharge summaries
• Chest CT scans and reports
• Chest X-rays, especially initial and most recent chest X-rays
• Other radiology studies that have been done. We would like the films, scans and subsequent reports. We prefer to receive films in electronic format.
• Reports of pH / impedance probe
• Report of sweat chloride or other testing for cystic fibrosis
• Report of surfactant genetic testing
• Microbiology results, such as respiratory cultures
• Lab results (from blood work), particularly labs testing immune system function
• Echocardiogram report
• Operative / procedure notes
• Pulmonary function test (PFT) reports
• Growth curve
• Lung biopsy slides and pathology report

Many children will not have had many of these tests. We only request records of studies that have been done, and will advise you if further testing is needed once we evaluate your child.

Download the medical release form (PDF)

You can also make the referral process go smoothly by contacting your insurance company to alert them to your child’s condition and check benefit details and referral requirements. If you find that your insurance does not cover this care, or your child does not have insurance, we may be able to help. Contact Financial Services at 513-636-4427 to discuss your concerns.