Registry sustainability refers to maintaining a registry and the data within the registry securely over time. In some cases, registries may be established for a short-term research project. Information concerning the expected life of a registry and plans for closing the registry, especially how data entered in the registry, should be included in an informed consent and are usually required for IRB approval.
However, many patient registries, especially in rare and genetic disease communities, are developed with the intention of sustaining the registry until after a cure for the disease(s) is available to the entire disease community, or even longer. To do so, the developers and sponsors of the registry must consider long-term funding for the registry, including fees that may be associated with a registry platform, staff, maintenance, and promotion. Contingency plans for registry sustainability are also key, e.g. defining the steps to be taken if the registry platform is no longer available or becomes too costly. In addition to plans to support and maintain a registry, steps that will be taken if the registry needs to close for an unforeseen reason (such as loss of funding or if the patient advocacy group dissolves) should be included in informed consent and is often necessary to gain IRB approval. Long-term stability and sustainability of patient registries is usually a concern of patients and families from rare disease communities as well as many underserved and minority communities.
Modifying and Stopping Registries from “Registries for Evaluating Patient Outcomes: A User’s Guide” [Internet, 3rd edition]
Recommendations for Improving the Quality of Rare Disease Registries [2018 published article]