Two minutes · who is answering, seven questions, then five optional ones about you
Which cost of looking for a diagnosis weighed most? Rank the five burdens. Nothing here identifies you.
Who is answering? optional Me, about my own illness A parent or caregiver, answering for a child
If the illness began in childhood and you are answering for a child you care for, choose the second, and the questions below are worded for the family that carried the cost.
1 Thinking about the whole time you were looking for a diagnosis, rank these from heaviest to lightest.Tap them in order. First tap is the heaviest. Tap again to undo.
Heaviest first:
Money paid out of pocket Time spent: visits, waiting, travel Paid work missed Unpaid care from family or friends Care you went without 2 Which one of the five did no one ever ask you about?Money paid out of pocket Time spent: visits, waiting, travel Paid work missed Unpaid care from family or friends Care you went without Someone asked about all of them
3 If a tool could show you one number about that time, which of the five should it lead with?Money paid out of pocket Time spent: visits, waiting, travel Paid work missed Unpaid care from family or friends Care you went without
4 Who should decide how these are weighed when a total is reported?Patients Clinicians Researchers The person reading their own number
5 How many different clinicians did you see before a diagnosis, or so far?clinicians 6 Sex optional i Asked because the federal prevalence files we cite are published by sex, and because NIH expects sex to be accounted for as a biological variable in the research it funds — NIH NOT-OD-15-102, Consideration of Sex as a Biological Variable in NIH-funded Research, 9 June 2015 . It is published only as a count. Where a federal file is silent on sex, /method says so.
Female Male Intersex Prefer not to say
Published on the register only where at least 11 answers give the same one, under the same rule as the state. Below that it is withheld and the withholding is counted in public.
7 When did it begin, and when was it given a name? optional Age when the symptoms began Prefer not to say Under 5 5–12 13–17 18–29 30–44 45–64 65 or older Age when it was diagnosed Prefer not to say Under 5 5–12 13–17 18–29 30–44 45–64 65 or older Not diagnosed yet
An illness that began before 18 is read as its own group on the register , so it never quietly reshapes the adult-onset answers, and a group is published only once it holds at least 11 answers.
Optional: who you are, so the sample can say who it covers Used only to publish who answered and who did not. Leave any of these blank.
Your age now Prefer not to say 18–29 30–44 45–64 65 or older Coverage during the search Prefer not to say Employer plan Marketplace or individual plan Medicaid Medicare Uninsured Other or mixed Region Prefer not to say Northeast Midwest South West Outside the U.S. State or territory Prefer not to say Alabama Alaska Arizona Arkansas California Colorado Connecticut Delaware District of Columbia Florida Georgia Hawaii Idaho Illinois Indiana Iowa Kansas Kentucky Louisiana Maine Maryland Massachusetts Michigan Minnesota Mississippi Missouri Montana Nebraska Nevada New Hampshire New Jersey New Mexico New York North Carolina North Dakota Ohio Oklahoma Oregon Pennsylvania Rhode Island South Carolina South Dakota Tennessee Texas Utah Vermont Virginia Washington West Virginia Wisconsin Wyoming American Samoa Guam Northern Mariana Islands Puerto Rico U.S. Virgin Islands Where you are now Prefer not to say Still searching Diagnosed Stopped looking
Your state is published on the register only where at least 11 answers name the same one. Below that it is withheld, and the withholding is counted in public, so a small count can never point at a person.
One sentence on what the search cost you (optional, held privately, never published word for word) Add my ranking to the count Rank all five (0 of 5 so far).
Why we ask Federal cost studies decide how to weigh money, time and lost work by analyst judgment. We are asking those who carried it. Everything you answer is published only as a count, alongside the number of answers and where they came from.
Read what is recorded . See the register for what everyone has said so far.
i Instrument version 2026-10-01.1. Burden ids: oop, time, work, unpaid, forgone.