NATIONAL EPIDERMOLYSIS BULLOSA REGISTRY 

NIH GUIDE, Volume 25, Number 28, August 16, 1996

 

RFP AVAILABLE:  NIH-NIAMS-97-1

 

P.T. 34



Keywords:

  Registries+ 

 

National Institute of Arthritis and Musculoskeletal and Skin Diseases

 

The National Institute of Arthritis and Musculoskeletal and Skin

Diseases (NIAMS) is seeking proposals for the continuation of a

National Epidermolysis Bullosa Registry.  The Registry will be aimed

at searching for the basic defect, improving methods of diagnosis,

and developing effective methods in treatment and prevention and

shall be continued to:

 

a.  Develop a roster of well-characterized patients with the

different forms of Epidermolysis Bullosa (EB).  Selected patients

will be requested to contribute specimens and to be followed as part

of diagnostic, research, and in some cases, therapeutic protocols.

 

b.  Determine with accuracy and precision the incidence and

prevalence of disease by clinical genetic type in a sufficiently

broad geographic region to permit extrapolation of data to the United

States as a whole.

 

c.  Increase information on genetics, particularly family patterns or

sporadic occurrence of disease, including penetrance and severity

 

d.  Assess disease distribution geographically, to search for

clusters and patterns and assess the societal and economic impact of

the disease

 

e.  Develop a pool of patients of the same genetic type for a wide

variety of studies on pathogenesis and genetics of EB, including

support for the banking of appropriate tissue specimens.

 

f.  Foster and support well-designed and well-executed clinical

trials of new therapeutic interventions in carefully selected groups

of patients with one or another form of EB.

 

INQUIRIES

 

The Government anticipates awarding one cost-reimbursement contract

as a result of this solicitation.  RFP NIH-NIAMS-97-1 will be

available on or about August 15, 1996 and proposals will be due on or

about October 15, 1996.  This advertisement does not commit the

Government to award a contract.  To receive a copy of the RFP, this

office with two self-addressed mailing labels.  Requests for the RFP

will be filled on a first-come first-served basis, until the supply

is exhausted.  Written requests must be submitted to:

 

Eileen Webster-Cissel

Contracts Management Branch

National Institute of Arthritis and Musculoskeletal and Skin Diseases

45 Center Drive, Room 5AS13A, MSC 6500

Bethesda, MD  20892-6500

Telephone:  (301) 594-2543

FAX:  (301) 480-4543

 

.

Return to 1996 Index

Return to NIH Guide Main Index

	Office of Extramural Research (OER)			National Institutes of Health (NIH) 9000 Rockville Pike Bethesda, Maryland 20892			Department of Health and Human Services (HHS)
Note: For help accessing PDF, RTF, MS Word, Excel, PowerPoint, Audio or Video files, see Help Downloading Files.