Granulomatous Hypophysitis Disease Registry

Patient information

Hypophysitis (or inflammation of the pituitary gland, also called the hypophysis) is a relatively rare disorder, with an estimated incidence of one case per ten million people each year.

We are particularly interested in one form of the disease, Granulomatous Hypophysitis (GH), which accounts for around 25% of cases. Because the disease is so rare, little is known about the causes of the disease, or about how to best treat it.

GH is usually diagnosed by your doctor taking a history and performing an examination, along with blood tests and brain scans. The most common symptoms include headache and visual changes.

We expect that you are reading this because you doctor has informed you that you, or a close relative or friend, has been diagnosed with this condition, and she/he is asking you to provide consent for us to collect some information about your case.

Collection of case information is very important to help us compare the outcomes from different cases, and determine the best way to treat cases like yours.

The information that we would like includes the symptoms that you had, the results of any tests performed, your treatment and how you recovered from the treatment. All of this information is “de-identified,” which means that it is made anonymous, and nobody can link this information back to you except your doctor.

We ask that your doctor fill in and submit the form, but the full questionnaire is available for you to see on the website.

While we would appreciate your consent to collect this information, it is entirely voluntary, and if you decide not to allow us to enter your information, it will in no way affect your medical care.

Any information collected is entirely confidential, and once your information is entered it is de-identified, so no-one else (apart from your doctor) can relate the information back to you personally.

You can ask you doctor any questions about your disease or about the registry.