RED/FERNZ registries

The registries are:

• rare endocrine disorders (RED)
• familial endocrine disorders (FERNZ). 

These endocrine conditions are rare but can have significant effects on both quality and length of life.

In New Zealand, we each have a unique national health index (NHI) number, so NZ is well placed to provide good quality epidemiological data on these conditions, including ethnic differences in diagnosis, treatment and outcomes.

We currently have no definitive data as to the prevalence of acromegaly, Cushing's disease, or inherited endocrine syndromes in New Zealand, but the predicted number of New Zealanders affected by these disorders is likely to exceed 3,000, based on international data.

The more people who join the registry, the more information researchers have on those with these rare disorders and participants with familial endocrine disorders. This may lead to improvements in the treatment and management of people with these disorders, both in New Zealand and overseas.

A registry is a type of database that contains details about people with a certain group of conditions. It may include research-relevant information such as your medical history and blood test results.

We keep your medical information anonymous to any third parties, unless you approve of them using it for ethically approved research first.

Current medical treatment and management is based on international best medical practice for people with rare endocrine disorders.

However, little is currently known about the people in New Zealand who live with these disorders.

This registry will secure identifying data and keep your information anonymous. We will use this anonymous information to look at the characteristics of the New Zealand population compared to international data.

We also provide opportunities for participants to be invited to ethically approved clinical research if they are eligible. By joining the registry, you can help us make sure that future care and treatment options are optimised for others like you.

1. To join the registry, you must have a diagnosis of a rare endocrine disorder, including acromegaly or Cushing's syndrome.
2. Send a referral form through your healthcare provider or support person, or you can refer yourself.
3. Once referred, you will receive more information, and we will ask you to complete a consent form before adding you to the registry.
4. We will then send you a baseline questionnaire and an annual survey to update us on your disorder and contact details.
5. If you are eligible to participate in clinical research, we will contact you with more details.

Rare endocrine disorders (RED)

You can join the registry if you have a clinical diagnosis of:

• acromegaly
• Addison's disease
• Cushing's syndrome

Familial endocrine disorders (FERNZ)

You can join the registry if you have a genetic or clinical diagnosis of the following familial endocrine disorders:

• multiple endocrine neoplasia type 1 (MEN1)
• multiple endocrine neoplasia type 2a (MEN2a)
• multiple endocrine neoplasia type 2b/3 (MEN2b/3)
• multiple endocrine neoplasia type 4 (MEN4)
• familial medullary thyroid cancer (FMTC)
• familial isolated hyperparathyroidism (FIH)
• familial hypocalciuric hypercalcaemia (FHH)
• familial isolated pituitary adenoma (FIPA)
• Von-Hippel-Lindau (VHL)
• McCune Albright (MCA)
• Carney complex

If the diagnosis your healthcare provider has given you and your family is not included here, and you think it should be, contact us.

To contact the RED registry, email redregistry@ccdhb.org.nz

To contact the FERNZ registry, email res-fernzregistry@ccdhb.org.nz