A comprehensive long-term registry has been created in REDCap. Our primary aim is to create, achieve and maintain a national Congenital Lung Malformation Registry to:
- Prospectively follow the current assessment, management, and outcomes of CLMs in Canadian children;
- Standardize the process of collecting epidemiologic data of CLMs in Canada;
- Standardize the treatment algorithms for CLMs in Canadian children;
- Provide a framework to assess the feasibility and cost effectiveness of novel diagnostic or therapeutic strategies in Canadian children with a CLM; and
- Promote education and research for Canadian children with CLMs through knowledge translation with local and national foundations and agencies.
Lead Site Primary Investigator: Ahmed Nasr (CHEO)