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An aspect of genealogy that I have recently become very interested in is medical genealogy.

Numerous sources give me information about my medical family history, such as:

  • anecdotal evidence (for recent ancestors and relatives)
  • death certificates (for cause of death)
  • newspapers (e.g. unexpected deaths, outbreaks of disease in the community)
  • military records (service records sometimes give information on medical history and injuries)
  • hospital/asylum records (but even records from 100+ years ago are often difficult to access!)

The genealogy programs I have used in the past do not seem to have good facilities for systematically recording medical information. Some programs have a "cause of death" field for death facts, but for other medical information I have to bury it in notes, which does not allow me to easily find, search, or visualize the information at a later date.

When I have collected more data, a goal might be to generate a list of all my ancestors and relatives that I know had a certain disease or condition.

What methods or programs do you use to store, record or organize medical genealogy information?

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You are correct. Most genealogy programs are not designed specifically for medical data.

However there are at least a few programs that you can try that specifically say they are designed for health information:

AncestryHealth - A free online tool that to preserve and share your family’s health information. It uses your family tree to show your health inheritance.

TapGenes - A free online site to discover your family’s health story and preserve health information in your family health tree.

Mozart.MD - A free online family tree maker that helps you collect, store, use and share health information for you and your family.

My Family Health Portrait - Allows you to enter, save, update and print your family health history. It assembles your information and makes a “pedigree” family tree that you can download. Free.

ItRunsInMyFamily.com - A free, open-access online family health history tool. It allows you to create your family pedigree, enter in diseases that run in your family, and present your family health history report to your healthcare professional. (Note: This one says it is launching in early 2016 and is accepting sign ups)

The links to these are at GenSoftReviews. At the time of my answer, there have not yet been any reviews or ratings for these programs. Nor have I personally tried any of them, so other than telling you about them, I cannot provide any further comparison.

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  • A belated thank you! I have taken a look at all of these, but none are quite what I was hoping for. All these sites are focused on my health (i.e. genetic risks for certain diseases), but what I'm really looking for is a way to organize medical information from a more historical perspective. A possible solution I'm working towards is using Gramps as it is very flexible and I can create whatever fields I like. – Harry Vervet Jan 14 '16 at 21:31
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    @HarryVervet You said "When I have collected more data, a goal might be to generate a list of all my ancestors and relatives that I know had a certain disease or condition." Family Historian also has several features that might be useful -- Named Lists, Flags, and custom attributes and events. It also has robust queries and can be extended with plug-ins. – Jan Murphy Aug 17 '16 at 6:00

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