Cushing syndrome (CS)

Advancing Care and Pathogenesis of Intractable Adrenal Diseases in Japan (ACPA-J)

 ・Principle investigator: Akiyo Tanabe

 ・Organization:

         Department of Diabetes, Endocrinology and Metabolism, National Center for Global

         Health and Medicine

Aim

1) To build a registry system and a cohort for patients with adrenal tumors

2) To produce new evidences of management of adrenal tumors contributing to clinical

     guidelines

Subjects

Inclusion criteria

Patients who were diagnosed as pheochromocytoma/ paraganglioma (PPGL), Cushing syndrome (CS), subclinical Cushing syndrome (SCS), ACTH-independent macronodular adrenal hyperplasia (AIMAH), adrenocortical cancer (ACC), and nonfunctioning adrenal tumor in the Department of Diabetes, Endocrinology and Metabolism, National Center for Global Health and Medicine and collaborating institutes between January, 2006 and December, 2015

Exclusion criteria

Patients who were considered as unsuitable for this study

Methods

Study design: Observational, multi-center study

Target sample size: 1,950 cases

End point

Primary outcome

Relationship between clinical findings (baseline characteristics, hormonal data, imaging findings or treatment) and clinical course/ prognosis

Secondary outcome

1. PPGL

  1) Best endocrine tests and decision criteria for diagnosis

  2) Tests and markers useful for early detection of malignant PPGL

2. CS/SCS

  1) Best endocrine tests and decision criteria for diagnosis

3. AIMAH

  1) Relation between treatment (adrenal surgery, medication) and prognosis

4. ACC

  1) Relation between clinical findings and prognosis

 

Research period

1. case recruitment: From the date of approval of the ethics committee to June, 2016

2. Research period: From the date of approval of the ethics committee to March, 2018 

Schedule of evaluation

1. EDC collection of clinical information of the patients with intractable adrenal diseases

2. PHEO: Secondary use of the data of the preceding research PHEO-J as PHEO-J2

3. Chronological follow up of the outcome after surgery and other treatment

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