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The New England Registry
for Paget's Disease of Bone is a listing of persons with this disease
who live in Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island
and Vermont.
The Registry is intended to:
- address the issue of prevalence of Paget's Disease in New England
- to identify geographic or family clusters of the disease
- to foster research in the clinical and basic sciences
- to promote education and treatment for all persons with Paget's Disease of Bone
Each person is important
to us. Your participation allows us to begin to measure the impact of
the disease in New England, the variability of the disease expression
and the response to therapy.
The Registry is located in The Massachusetts General Hospital in Boston,
MA. It is being developed in collaboration with The Paget Foundation for
Paget's Disease of Bone and Related Disorders, a national non-profit organization
that provides education, outreach and physician referrals for patients
and families. The Paget Foundation also helps fund basic and clinical
research in this disease.
The New England Registry for Paget's Disease of Bone is beginning regionally,
with the hope of becoming a National Registry for Paget's Disease of Bone
in the future.
