How can a Medical/Research Professional participate in this Registry?
This registry will seek to catalog medical professionals with a treatment and/or research interest in hypothalamic obesity. The registry will also recruit patients of all ages who have a diagnosis consistent with hypothalamic obesity and request that details of their case be submitted by the patients and/or their caregivers. The website will provide information about hypothalamic obesity so that medical providers and the general public will be more educated about the condition and, in turn, become aware of recruitment criteria. In addition, the existence of the registry will be publicized at www.clinicaltrials.gov, and professional and research societies, including but not limited to professional organizations for pediatrics, endocrinology, surgery, and obesity research.
Criteria for inclusion
1. Medical professionals who self-identify as having an interest in hypothalamic obesity treatment or research will be included.
2. Registry cases will be those individuals who are believed to be affected by hypothalamic obesity as demonstrated 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
There is no upper limit for the number of participants for this study
Criteria for exclusion:
Cases will not be included if the submitting person is not the patient or the legally authorized representative of the patient. Cases will also be excluded if the registry steering committee deems that the patient’s obesity is likely unrelated to hypothalamic damage or is of unknown etiology. Reasonable attempts will be made to limit the registry to those individuals with known and verified hypothalamic damage or dysfunction (ie a known craniopharyngioma or MC4R mutation).
How do I enroll in the registry?
Consent is implied from the submitting medical professional. The registration/enrollment process will determine whether you are interested in participating as an investigator in future research studies or would like to only act as a potential source of research subjects. There will be no written consent for participation for healthcare providers.
The following information will be requested from the medical professional:
1. Characteristics of the submitting institution (Name, address, type of hospital or clinic [adult/pediatric].
2. Contact information for medical professional registering the case (Name, phone, email and street addresses; webpage for their organization; medical or surgical specialty)
3. Level of interest.
Go to next page for Physician and Researcher Registration Form