
Kathy Fiscus
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Sep 23, 2026
The PMS DataHub: What Families Need to Know
4:45
4:54
5:06
L
4:23LaurenHOST
And so if you're a researcher, whenever you request data generally we're going to be sending you data across both platforms they have similar but a little bit different information however if you're a family member you might be in the pmsir you might be in the data hub you might be neither you might be in both um so kathy can you help families understand that

Kathy FiscusGUEST
sure yeah if a family has never enrolled in the pmsir then they are not in the PMS IR.

Kathy FiscusGUEST
If a family enrolled in the PMS IR and uploaded a genetic report, an account was created for them in the PMS Data Hub so that the report could be curated using the new standardized form.

Kathy FiscusGUEST
These families can log into the Data Hub using their PMS IR credentials if they remember them.
10 MINS LATER
L
15:44LaurenHOST
And so always with a grain of salt, but I think you're point is so important because if you know there's a new symptom that pops up it's important for families to know like is this expected is this unexpected it can really help lead to different treatment regimens or protocols but then also in the case of you know this is a symptom that maybe isn't common in phalamodermic syndrome and so that asks its own questions too what other functions are in data hub that families might find useful