Management of a Rare Disease Population: A Model for Identifying a Patient Population With Tuberous Sclerosis Complex.

نویسندگان

  • Michael P Johnson
  • Jonathan C Johnson
  • Nicole M Engel-Nitz
  • Qayyim Said
  • Judith Prestifilippo
  • Tanjala T Gipson
  • James Wheless
چکیده

Tuberous sclerosis complex (TSC) is a rare genetic disorder affecting the brain and other vital organs with varying symptoms and severity among patients. This study developed and validated a risk model to identify patients with TSC using large databases of medical and pharmacy claims.

برای دانلود رایگان متن کامل این مقاله و بیش از 32 میلیون مقاله دیگر ابتدا ثبت نام کنید

ثبت نام

اگر عضو سایت هستید لطفا وارد حساب کاربری خود شوید

منابع مشابه

The prevalence of pica in tuberous sclerosis complex

BACKGROUND Pica and Tuberous sclerosis complex (TSC) are rare disorders. We carried out a population survey of pica in our TSC patient population. FINDINGS Pica was identified in four percent of cases of TSC. It was associated with adult onset or persistence into adulthood, epilepsy, severe learning difficulties and anaemia. CONCLUSIONS Pica in TSC is a rare disorder and a coherent history ...

متن کامل

A Patient with Tuberous Sclerosis Complex and Spinal Muscular Atrophy; A Case Report

Background Tuberous Sclerosis Complex (TSC), and Spinal Muscular Atrophy (SMA) are two inherited disorders while they are genetically independent. TSC is characterized by the formation of multiple hamartomas in nearly all organs. SMA is a destructive neurological disorder leading to progressive muscular weakness and atrophy. Case Presentation</e...

متن کامل

گزارش یک مورد اسپاسم شیرخوارگی در زمینه تو بروس اسکلروزیس

ABSTRACT Tuberous Sclerosis(T.S) is an inherited disease (with autosomal dominant trait). It is characterised by different skin manifestations involvement of central nervous system and hamartomas in different organs of the body .Of Course ,about 10% of cases are due to new mutations Presentation of this patient, a 4-month-old male infant with recurrent convulsions cflexor type infantile spasm ...

متن کامل

Cardiac Rhabdomyomas and Congenital Hypothyroidism: A Coincidence or Hamartia

Cardiac rhabdomyomas are the most common primary cardiac tumors in children. These tumors are generally asymptomatic, although they may be associated with neonatal tuberous sclerosis complex. Despite the fact that thyroid dysfunction rarely occurs in tuberous sclerosis, papillary adenomas (hamartomas) of the thyroid gland have been reported in a number of autopsies. Herein, we present the case ...

متن کامل

Tuberous sclerosis with Cardiac Tumor in fetus with Diabetic Mother

Introduction A heart tumor in children is rare and the most primary tumor of the heart is rhabdomyoma. We report a case of cardiac mass diagnosed at 32th weeks of pregnancy while the mother had gestational diabetes Mellitus. Serial echocardiography revealed regression of the tumor; then follow up of the patient confirmed tuberous sclerosis.

متن کامل

ذخیره در منابع من


  با ذخیره ی این منبع در منابع من، دسترسی به آن را برای استفاده های بعدی آسان تر کنید

عنوان ژورنال:
  • Managed care

دوره 26 8  شماره 

صفحات  -

تاریخ انتشار 2017