What's New
We got back from the American Society for Pediatric Hematology Oncology (ASPHO) in Pittsburgh with new colleagues and partners, predisposition research at other institutions, and exciting ideas to improve the app. Here is something we learned.
There is no consensus on the scans protocol worldwide, for the predispositions we cover, some of them are very established and others vary a ton between institutions. This is because the field of cancer predispositions is fairly new and scientists haven't figured out the perfect recipe to monitor the appearance of tumors. Most of the discussion lies around when to start surveillance, and when to end it SAFELY! Your providers know that having recurring scans every year or every few months is a burden, and they want to minimize the impact it has on your life, but doing so safely and with data that supports it.
While that discussion is going on, we thought it best to share the protocols we follow in the app to provide you with the specific scans for your age and gender. To view them, simply go to your profile and in the Suggested Protocol Page, click on View Protocol. You will see a lifetime view of the scans, their frequency, and when to start and stop them. This can serve as a conversation starter with your provider related to your care and to help improve education and awareness of your predisposition.
As always, we are working behind-the-scenes to improve this tool, stay tuned.
App Description
Born out of Emory University and Children's Healthcare of Atlanta (CHOA), the HomeTown Manager App is built to help you stay on track of the proactive and targeted surveillance needed. The app supports 6 predispositions:
1. Hereditary Pheochromocytoma Paraganglioma Syndrome (HPPS)
2. Familial Adenomatous Polypopsis (FAP)
3. Li Fraumeni Syndrome (LFS)
4. DICER1
5. Von Hippel-Lindau Syndrome (VHL)
6. Lynch Syndrome
Our focus is to help the caretaker of the family with management of these predispositions. To create this app we interviewed families with 1 to 4 family members with the predisposition. We learned that making sure everybody sticks to the protocol can be challenging: different kids' protocols, many appointments, keeping track of results, and a lot of stress. HomeTown's intention is to centralize that on an app to make your life a bit easier.
Disclaimer: please remember to seek a doctor's advice in addition to using this app before making any medical decisions.
iPhone Screenshots
(click to enlarge)
App Changes
- September 15, 2023 Initial release
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