Protocol Information for Doctors and Patients:

Purpose: To identify patients in New England with Paget's Disease of Bone, and to enroll them in The New England Registry for Paget's Disease of Bone.

Case Ascertainment: To document through medical records the diagnosis of Paget's Disease of Bone, and to verify name and birth date of person with Paget's Disease so as to count the person once for the purpose of prevalence data and registry entry.

Procedure:

• Mail questionnaire and consent form to patient, following patient inquiry; enroll patient in registry upon receipt of consent
  
  Or
  
  
• Ask treating physician permission to mail a questionnaire and consent form to his/her patient with Paget's Disease of Bone; mail questionnaire and consent form to patient; enroll patient on receipt of this

No patient may be enrolled in The New England Registry for Paget's Disease of Bone without his or her express consent.

Data Management: Confidentiality is maintained at all times. Patients are entered into the database by number; no names or identifying data are used. A copy of these numbers and the names of patients will be kept on file at Massachusetts General Hospital should a patient ever need to have access to his or her records, or should information be discovered that merited contacting patients in the registry. The database will be professionally managed and maintained.

Future Studies:
1) Epidemiology -
Is the prevalence of Paget's Disease decreasing?

2) Bench research -
Is the cause viral, genetic or both?

3) Clinical research -
Which bisphosphonate is indicated in which patient?

4) Education -
Paget's Disease of Bone can be treated; how can physician and patient awareness be improved?