Patient Registries- What are they and why should you be interested?

A patient registry collects information (data) about patients who are affected by a particular condition.  The data in registries can be entered by patients themselves, by their doctor or by a combination of the two.  Information from each individual patient may be collected over a long period of time, which helps health care professionals to create better or new standards of care that can improve patient outcomes and life expectancy, even in the absence of new therapies.

Registries are also key instruments for increasing knowledge on rare conditions and play an important role in identifying specific research questions and patients who could take part in clinical trials.

Do you know if there is a patient registry for your condition?  Ask your healthcare professional/patient association for information.

The Office for Rare Conditions works closely with a number of registry projects here in the UK and internationally. For more information about them please follow the links below:

I-DSD/I-CAH and I-TS support research in rare conditions affecting sex development / /

Global Registry For Novel Therapies In Rare Bone & Endocrine Conditions