Patient Registry

The International Registry for Hypothalamic Obesity Disorders (IRHOD) is a means to increase public awareness of hypothalamic obesity, facilitate future research and ultimately improve management of this disorder. This website will provide information about hypothalamic obesity and establish an international registry for these cases.

 

What is the purpose/objective of this registry?

The purpose of this registry is to start an electronic database of patient information from people that have been diagnosed with a condition known as Hypothalamic Obesity. A part of the brain called the hypothalamus can become damaged or not function properly. This causes many people to overeat, burn less calories, and gain weight.

Because hypothalamic obesity is relatively rare, effective research into treatments require locating patients all over the world. By joining this database you allow researchers /medical professionals interested in these rare conditions to find you and possibly participate in future research.

Why would I take part in this Registry?

You are being asked to take part in this database because you or your child have/has been diagnosed with a condition such as those described BELOW that are known to affect the way the hypothalamus works. We are requesting that details of your case be submitted by you or your caregiver. Medical professionals who register as having an interest in hypothalamic obesity treatment or research will be included.

Registry cases will be those individuals who are believed to be affected by hypothalamic obesity as demonstrated by obesity in the setting of one or more of these diagnoses/conditions or exposures:

  • Diagnoses, neoplastic. Including but not limited to: craniopharyngioma, epithelioma, hamartoma, teratoma, ganglioneuroma, pituitary macroadenoma, leukemia, secondary metastases.
  • Diagnoses, Inflammatory. Including but not limited to: sarcoidosis, tuberculosis, histiocytosis X, encephalitis
  • Diagnoses, Genetic. Including but not limited to: Leptin deficiency, Leptin receptor mutation, CART (cocaine- and amphetamine-related transcript) mutation, POMC (proopiomelanocortin) mutation, PC1 deficiency, MCR4 (melanocortin receptor 4) mutation, BDNF or TrkB pathway mutation, FTO (fat mass and obesity-associated gene region), Prader–Willi syndrome, Bardet–Biedl syndrome
  • Diagnoses, Other. Including but not limited to: head trauma, prior neurosurgery, cranial radiotherapy, cerebral aneurysm

Who is collecting the information in this Registry?

This patient registry is directed by Thomas Inge, a researcher at Cincinnati Children’s Hospital. He is responsible for the supervision of this registry.
Funds to develop this registry were provided by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) which is part of the National Institutes of Health (NIH).

How do I enroll in the registry?

You will be asked to provide some basic information that is needed to create your registry account.  We have provided information about the Hypothalamic Registry for either adult or child/adolescent participants.
We describes the purpose of the Hypothalamic Registry, as well as the risks and possible benefits of participating.  If you volunteer to take part in this Hypothalamic Registry, none of your information will be saved until you have read, understand and agree to participate in the registry.

We Welcome You to Enroll in the Registry 

Please proceed to enrollment