Genealogical databases as a tool for extending follow-up in clinical reviews

Int Forum Allergy Rhinol. 2016 Aug;6(8):880-2. doi: 10.1002/alr.21744. Epub 2016 Mar 25.


Background: Long-term follow-up in clinical reviews often presents significant difficulty with conventional medical records alone. Publicly accessible genealogical databases such as provide another avenue for obtaining extended follow-up and added outcome information. No previous studies have described the use of genealogical databases in the follow-up of individual patients.

Methods:, the largest genealogical database in the United States, houses extensive demographic data on an increasing number of Americans. In a recent retrospective review of esthesioneuroblastoma patients treated at our institution, we used this resource to ascertain the outcomes of patients otherwise lost to follow-up. Additional information such as quality of life and supplemental treatments the patient may have received at home was obtained through direct contact with living relatives.

Results: The use of resulted in a 25% increase (20 months) in follow-up duration as well as incorporation of an additional 7 patients in our study (18%) who would otherwise not have had adequate hospital chart data for inclusion. Many patients within this subset had more advanced disease or were remotely located from our institution. As such, exclusion of these outliers can impact the quality of subsequent outcome analysis.

Conclusion: Online genealogical databases provide a unique resource of public information that is acceptable to institutional review boards for patient follow-up in clinical reviews. Utilization of data led to significant improvement in follow-up duration and increased the number of patients with sufficient data that could be included in our retrospective study.

Keywords: esthesioneuroblastoma; follow-up studies; genealogy and heraldry; lost to follow-up; medical records.

MeSH terms

  • Databases, Factual*
  • Esthesioneuroblastoma, Olfactory / epidemiology
  • Follow-Up Studies
  • Genealogy and Heraldry*
  • Humans
  • Lost to Follow-Up
  • Nasal Cavity
  • Nose Neoplasms / epidemiology