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

Have You Been Helped by Health IT?

Do you have a story of how health IT, especially access to data, helped in a case?  Improved an outcome, speeded a diagnosis, caught an error, anything?

The National eHealth Coalition is looking for real-world anecdotes, for use (anonymized or not) in their new “NeHC University”:

On June 20th we are hosting NHIN 304 – HIE Success Stories from the Patient Perspective. Our goal for that class is to get some stories from/focusing on patients whose health was improved or whose care was made more effective as a result of health information technology and exchange. …

We are not necessarily looking for patients to speak on the webinar (although that would be great), but we do want to share some patient-centric examples that will emphasize the value proposition of health information exchange from the patient/consumer perspective.

To contribute, write directly to NeHC’s Jenna Bramble at jbramble@nationalehealth.org

Other Diseases

Many of the people who post on the message boards suffer from other diseases, as well as Cushing’s. These links help to provide some information about these diseases.

~A ~

Acanthosis nigricans
This Topic on the Message Boards.

Acromegaly
This Topic on the Message Boards.

Addison’s Disease
This Topic on the Message Boards.

Adrenoleukodystrophy
This Topic on the Message Boards.

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~B ~

Barrett’s esophagus

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~C ~

Carney Complex
This Topic on the Message Boards.

Central Serous Retinopathy
This Topic on the Message Boards.

Congenital Adrenal Hyperplasia (CAH)
This Topic on the Message Boards.

Conn’s Syndrome
This Topic on the Message Boards.

Craniopharyngioma
This Topic on the Message Boards.

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~D ~

Diabetes insipidus
This Topic on the Message Boards.

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~E ~

Ectopic ACTH Syndrome
This Topic on the Message Boards.

Empty Sella
This Topic on the Message Boards.

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~F ~

Fibromyalgia
This Topic on the Message Boards.

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~G ~

Gigantism
This Topic on the Message Boards.

Growth Hormone (hGH)
This Topic on the Message Boards.

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~H ~

Hirsuitism
This Topic on the Message Boards.

Hyperprolactinemia
This Topic on the Message Boards.

Hyperthyroidism
This Topic on the Message Boards.

Hypoalderostonism
This Topic on the Message Boards.

Hypocalcemia
This Topic on the Message Boards

Hypopituitarism
This Topic on the Message Boards.

Hypothyroidism
This Topic on the Message Boards.

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~I ~

Insulin Resistance
This Topic on the Message Boards.

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~K ~

Kidney Disease
This Topic on the Message Boards.

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~L ~

Lyme Disease
This Topic on the Message Boards.

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~M ~

Madelung’s Disease
This Topic on the Message Boards.

Menopause
This Topic on the Message Boards.

MEN Type 1
This Topic on the Message Boards.

Myasthenia Gravis
This Topic on the Message Boards.

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~N ~

Nelson’s Syndrome
This Topic on the Message Boards.

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~O ~

Osteopenia
This Topic on the Message Boards.

Osteoporosis
This Topic on the Message Boards.

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~P ~

Panhypopituitarism
This Topic on the Message Boards.

PCOS
This Topic on the Message Boards.

• PCOS: Polycystic Ovary Syndrome
• From Health Talk: Polycystic Ovarian Syndrome
• High Prolactin Levels in PCOS Women
• Low Carbohydrate PCOS Diets: Hype, Hoax or Cure?
• PCOS: Antagon, A New Infertility Drug
• PCOS: Clomid and Infertility
• PCOS Study in Virginia
• PCOS Symptoms

Perimenopause
This Topic on the Message Boards.

Pheochromocytoma
This Topic on the Message Boards.

Pituitary dwarfism
This Topic on the Message Boards.

Premature menopause
This Topic on the Message Boards.

Primary pigmented nodular adrenocortical disease (PPNAD)
This topic on the Message Boards

Prolactinoma
This Topic on the Message Boards.

Pseudo Cushing’s
This Topic on the Message Boards

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~R ~

Rathke’s cleft cyst
This Topic on the Message Boards.

ROHHAD (Rapid-Onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation Presenting in Childhood)
This Topic on the Message Boards

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~S ~

Sheehan’s Syndrome
This Topic on the Message Boards.

Stein-Leventhal Syndrome
This Topic on the Message Boards.

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~T ~

Thymoma
This Topic on the Message Boards.

Thyroid Gland Disorders
This Topic on the Message Boards.

Turner’s Syndrome
This Topic on the Message Boards.

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~V ~

Von Hippel-Lindau disease
This Topic on the Message Boards.

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~Z ~

Zollinger-Ellison Syndrome

Where Can I Find…?

Also in the Cushings-Help family of websites

• The original site, founded in July, 2000. http://cushings-help.com
• http://www.cushings-support.com
• http://www.cushie.info
• Soon to be upgraded Cushing’s Help Organization site
• The message boards, founded in September, 2000 http://cushings.invisionzone.com/index.php
• New Wiki http://www.cushiewiki.com
• A site to host images and files http://www.cushingsonline.com
• Cushing’s Disease/Syndrome Knol
• http://www.addisons-help.com
• Addison’s Disease Knol
• and various Cushing’s/Adrenal blogs
  • Cushing’s Help on blogspot.com
  • Cushie Boggers on blogspot.com
  • Addison’s Help on blogspot.com
  • Cushing’s Help on Posterous.com
  • Cushing’s Help Podcasts on Posterous.com
  • Cushing’s Group on Posterous.com
  • Cushing’s Help on cushie.info

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