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Pulmonary hypertension (PH) is a progressive and ultimately fatal disease. According to WHO, it is classified into five clinically diverse groups (WHO Groups I-V). This classification includes rare subgroups: pulmonary arterial hypertension (PAH; WHO Group 1), chronic thromboembolic pulmonary hypertension (CTEPH; WHO Group 4), and PH with unclear or multifactorial mechanisms (WHO Group 5) [1].

In PH, there are several recently completed and currently ongoing registries available in different formats. Registries mandated by regulatory agencies are typically formatted according to CDISC SDTM standards. Registries are vital sources of information that can provide insight into the characteristics and longitudinal trends of a specific patient population [2, 3].

The federated PH registry network PHederation was launched to enable efficient generation of real-world evidence across PH registries worldwide. Since all participating registries have been mapped to OMOP CDM, study queries and aggregate study results can easily be shared across the network (e.g. via ATLAS), while patient-level data are kept secured behind firewalls. It is important that conversions of new PH registries into OMOP CDM are consistent with previously introduced conventions.

This wiki will guide you through the conversion of your PH registry data into OMOP CDM. In computing, such a conversion is called ETL.

Sometimes in this wiki, we reference Study Data Tabulation Model (SDTM) tables as examples of source tables. It it not required to be proficient in SDTM, but having some familiarity would be helpful. More information about CDISC SDTM can be found on their official website.

[1] Galiè N, Humbert M, Vachiery JL, Gibbs S, Lang I, Torbicki A, Simonneau G, Peacock A, Vonk Noordegraaf A, Beghetti M, Ghofrani A, Gomez Sanchez MA, Hansmann G, Klepetko W, Lancellotti P, Matucci M, McDonagh T, Pierard LA, Trindade PT, Zompatori M, Hoeper M; ESC Scientific Document Group. 2015 ESC/ERS Guidelines for the diagnosis and treatment of pulmonary hypertension: The Joint Task Force for the Diagnosis and Treatment of Pulmonary Hypertension of the European Society of Cardiology (ESC) and the European Respiratory Society (ERS): Endorsed by: Association for European Paediatric and Congenital Cardiology (AEPC), International Society for Heart and Lung Transplantation (ISHLT). Eur Heart J. 2016 Jan 1;37(1):67-119. doi: 10.1093/eurheartj/ehv317. Epub 2015 Aug 29. PMID: 26320113.

[2] Jansen-van der Weide MC, Gaasterland CMW, Roes KCB, Pontes C, Vives R, Sancho A, Nikolakopoulos S, Vermeulen E, van der Lee JH. Rare disease registries: potential applications towards impact on development of new drug treatments. Orphanet J Rare Dis. 2018 Sep 5;13(1):154. doi: 10.1186/s13023-018-0836-0. PMID: 30185208; PMCID: PMC6126025.

[3] Lacaze P, Millis N, Fookes M, Zurynski Y, Jaffe A, Bellgard M, Winship I, McNeil J, Bittles AH. Rare disease registries: a call to action. Intern Med J. 2017 Sep;47(9):1075-1079. doi: 10.1111/imj.13528. PMID: 28891182.