The Children’s Interstitial and Diffuse Lung Disease Research Network (chILDRN) is a multi-disciplinary group of pulmonary, neonatal, radiology, pathology and genetic experts all working together to discover better diagnostics, underlying causes, improved treatments, and ultimately cures for all forms of chILD.
1) The chILDRN consists of multidisciplinary care experts with 8 Centers of Excellence and 9 satellite centers throughout the country. For information about specific centers, see Find a specialist.
2) The chILDRN worked with RemedyMD to create a national web-based database to collect research information that is now being used across the country.
3) Electronic Medical Health Record “Epic” is creating “smart” clinical forms for use around the country with the data we want to collect to improve integration of our research database with many hospitals electronic medical records. This will improve the efficiency of critical data collection by physicians.
4) They have published new standards for clinical care through the American Thoracic Society (ATS). Click ATS Consensus Statement Guidelines to download.
5) The chILDRN has several centers that are performing genetic research in the network. This work is looking for genetic causes of many forms of chILD in individual families, disease groups and in family pedigrees.
6) There is important novel biomarker work in the network. Biomarkers are measurable indicators for disease like measuring proteins in proteomics. As we move forward, understanding biomarkers will be increasingly important in diagnostic testing, discovering possible drug targets, and measuring treatment outcomes.
7) There is exciting stem cell research being performed on known chILD disorders for new understanding of mechanisms and treatments.
8) New diagnostic codes (ICD-9 codes) for several chILD diagnoses have been adopted. Click ICD-9 coding Published in CHEST to download.
9) There are several organizations in Europe that are actively studying chILD. The chILDRN and our international chILD organizations have been working to develop partnerships with the European chILD community. These collaborations will be important in future longitudinal studies and clinical trials.