For Fibrous Dysplasi
<< For Paget's Disease of Bone
Attention: Paget's Disease Patients in New England

The New England Registry for Paget's Disease of Bone is being organized at Massachusetts General Hospital in Boston, MA. The purpose of the registry is as follows:

  • Provide statistical data regarding incidence and prevalence of Paget's disease in New England.
  • Identify geographic and/or familial clusters of Paget's disease in order to gain further insight into the genetic basis of Paget's disease.
  • Further understand the course of Paget's disease by providing a database for researchers, clinical trials for patients, and bone tissue for scientific study.
  • Document the course of patients who have Paget's disease, and address the effectiveness of newer bisphosphonates in preventing complications.

All patients with Paget's disease living in New England are invited to participate in the registry. No blood tests are required. Participants will remain under the care of their primary physician. However, consultations with registry physicians will be free of charge to those persons having no health insurance. Patients may make appointments by calling Massachusetts General Hospital at 617-726-7938.

The registry began September 1, 1999, and was established in collaboration with The Paget Foundation and supported with an unrestricted educational grant from The Alliance for Better Bone Health: a partnership of Procter & Gamble Pharmaceuticals and Aventis Pharmaceuticals. The Medical Director of the registry is Margaret Seton, MD. z

For more information, write to Margaret Seton, MD-Medical Director, The New England Registry for Paget's Disease of Bone, Arthritis Unit Bulfinch 165, Massachusetts General Hospital, Boston, MA 02114 or click here:http://www.massgeneral.org/pagetregistry

 

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