NIH Cushing’s Syndrome Survey

Information about this survey and your consent to participate

Patients with Cushing’s syndrome report decreased quality of life before and after surgical treatment. We are investigators at the U.S. National Institutes of Health who care for patients with Cushing’s syndrome. We want to learn more about the patients’ experience during the post-surgical recovery phase with particular reference to quality of life. We are inviting patients like you who have had surgical treatment to complete the survey. Your responses will be gathered anonymously and will be treated confidentially; we hope to use them in a publication so that other physicians can learn about these issues.

Please kindly complete the following online questionnaire which is comprised of approximately 27 questions and should take around 15 minutes.

Take the survey here: http://csrecoverypatient.nichd.nih.gov/cssurvey/patientaccept.html

NIH Cushing’s Clinical Trials

Rank Status Study
1 Recruiting Safety and Efficacy of LCI699 in Cushing’s Disease Patients

Condition: Cushing Disease
Intervention: Drug: LCI699
2 Recruiting Preoperative Bexarotene Treatment for Cushing’s Disease

Condition: Cushing’s Disease
Intervention: Drug: Bexarotene
3 Recruiting Rosiglitazone in Treating Patients With Newly Diagnosed ACTH-Secreting Pituitary Tumor (Cushing Disease)

Condition: Brain and Central Nervous System Tumors
Interventions: Drug: rosiglitazone maleate;   Other: laboratory biomarker analysis
4 Unknown  Study of Depression, Peptides, and Steroids in Cushing’s Syndrome

Condition: Cushing’s Syndrome
Intervention:
5 Recruiting Examination of Brain Serotonin Receptors in Patients With Mood Disorders

Conditions: Mood Disorder;   Bipolar Disorder;   Depression
Intervention:
6 Recruiting An Investigation of Pituitary Tumors and Related Hypothalmic Disorders

Conditions: Abnormalities;   Craniopharyngioma;   Cushing’s Syndrome;   Endocrine Disease;   Pituitary Neoplasm
Intervention:
7 Recruiting Prospective, Open-Label, Multicenter, International Study of Mifepristone for Symptomatic Treatment of Cushing’s Syndrome Caused by Ectopic Adrenal Corticotrophin Hormone (ACTH) Secretion

Condition: Cushing’s Syndrome
Intervention: Drug: Mifepristone
8 Recruiting Anesthesia Management of Retroperitoneal Adrenalectomies

Condition: Adrenal Tumors
Intervention:
9 Recruiting Defining the Genetic Basis for the Development of Primary Pigmented Nodular Adrenocortical Disease (PPNAD) and the Carney Complex

Conditions: Cushing’s Syndrome;   Hereditary Neoplastic Syndrome;   Lentigo;   Neoplasm;   Testicular Neoplasm
Intervention:
10 Recruiting New Imaging Techniques in the Evaluation of Patients With Ectopic Cushing Syndrome

Condition: Cushing Syndrome
Intervention:
11 Recruiting Adolescence, Puberty, and Emotion Regulation

Conditions: Mood Disorder;   Neurobehavioral Manifestation;   Healthy
Intervention:
12 Recruiting Insulin Sensitivity and Substrate Metabolism in Patients With Cushing’s Syndrome

Conditions: Cushing’s Syndrome;   Insulin Resistance
Intervention: Procedure: Surgery
13 Recruiting Study of Adrenal Gland Tumors

Condition: Adrenal Gland Neoplasm
Intervention:
14 Not yet recruiting Adrenalectomy Versus Follow-up in Patients With Subclinical Cushings Syndrome

Condition: Adrenal Tumour With Mild Hypercortisolism
Intervention: Procedure: Adrenalectomy
15 Recruiting Assessing Fertility Potential in Female Cancer Survivors

Condition: History of Cancer
Intervention:
16 Recruiting Study of Pasireotide in Patients With Rare Tumors of Neuroendocrine Origin

Conditions: Pancreatic Neoplasm;   Pituitary Neoplasm;   Nelson Syndrome;   Ectopic ACTH Syndrome
Intervention: Drug: Pasireotide LAR
17 Recruiting Adrenal Tumors – Pathogenesis and Therapy

Conditions: Adrenal Tumors;   Adrenocortical Carcinoma;   Cushing Syndrome;   Conn Syndrome;   Pheochromocytoma
Intervention:
18 Recruiting Prevalence of Pituitary Incidentaloma in Relatives of Patients With Pituitary Adenoma

Condition: Pituitary Tumor
Intervention:
19 Recruiting Safety and Effectiveness of Granulocyte Transfusions in Resolving Infection in People With Neutropenia (The RING Study)

Conditions: Neutropenia;   Infection
Interventions: Drug: Standard antimicrobial therapy;   Biological: Granulocyte transfusions;   Drug: G-CFS/dexamethasone;   Device: Apheresis machine
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