Question
To ask the Secretary of State for Health and Social Care, what data her Department holds on the number of (a) people diagnosed with adrenal insufficiency in England and (b) those people who have experienced an adrenal crisis in each of the last five years
Answer
The Department does not hold the requested data on adrenal insufficiency or adrenal crisis. The National Disease Registration Service (NDRS) in NHS England collects, curates, quality assures, and analyses data on people with rare and congenital conditions across the whole of England. We are continuing to expand and standardise national rare disease registration in England through the introduction of the national Rare Disease Data Set, but do not currently hold validated data on adrenal insufficiency diagnoses. Further information on the Rare Disease Data Set is available at the following link: https://digital.nhs.uk/ndrs/data/data-sets/rdds
Verdict: GREEN (88/100)
The Department states plainly that it does not hold the requested data on the number of people diagnosed with adrenal insufficiency, and that it does not currently hold validated diagnosis data for this condition. It also says it does not hold data on adrenal crisis, so both parts of the question get a direct answer. The reply points to the National Disease Registration Service and the Rare Disease Data Set as places where related information would sit, but it gives no substitute figures, so a reader would know clearly that the numbers are not available from the Department.
How we got there
| Question item | Coverage | Specificity | Rationale |
|---|---|---|---|
| What data the department holds on the number of people diagnosed with adrenal insufficiency in England in each of the last five years. | Addressed | Direct | The reply states plainly that the Department does not hold the requested data and that it does not currently hold validated adrenal insufficiency diagnosis data, which is a direct answer to the request for diagnosis counts. The NDRS and Rare Disease Data Set statements explain where such data would sit, but they are context rather than a substitute figure. |
| What data the department holds on the number of people with adrenal insufficiency in England who have experienced an adrenal crisis in each of the last five years. | Addressed | Direct | Statement 1 explicitly covers both adrenal insufficiency and adrenal crisis, saying the Department does not hold the requested data on either, so the crisis-specific request receives a direct answer. The supporting statements on NDRS and the Rare Disease Data Set add context without changing the answer. |