INTERNATIONAL PROGERIA REGISTRY

Hutchinson-Gilford Progeria Syndrome (Progeria) is a very rare condition. This International Registry has been established to provide services and information to families of children with Progeria, treating physicians, and researchers, and to better understand the nature and natural course of Progeria.  This serves to improve communication of ideas among interested researchers, and assures rapid distribution of any new information that may benefit patients and/or their families.  Your cooperation in registering and in helping to contribute information on Progeria individuals to the Registry is greatly appreciated. 
 
PRF considers confidentiality a high priority.  The personal identifying information you submit on these forms will not be distributed in any way without explicit consent from the Progeria subject or their parent or guardian.   
 
You may email the completed forms to info@progeriaresearch.org or 
Return completed forms directly to Registry Headquarters: 
 
The Progeria Research Foundation, Inc. 
PO Box 3453 
Peabody, MA 
01961-3453 
USA 

FedEx or other delivery address: 532 Lowell Street, Peabody, MA  01960 
Website:www.progeriaresearch.org 
Email:  info@progeriaresearch.org 
Telephone: (978) 535-2594 
Fax: (978) 535-5849 

PRF International Progeria Registry
Registration of Progeria Subject 
 
Who is registering this Progeria Subject? 
Name:_________________________________________________________________ 
Title:__________________________________________________________________ 
Specialty:_______________________________________________________________ 
Address:________________________________________________________________ 
Telephone:______________________________________________________________ 
Email: _________________________________________________________________ 

The information I have provided may be summarized and communicated to other health care professionals if there is proper acknowledgement and the patient’s identity remains confidential. 

 	         ______________________________________________________ 
  	          Signature      Date 

Today’s Date:  ________________________________________________________ 
 
Progeria Subject’s Name:  _______________________________________________ 
 
Birth Date: ___________________________________________________________ 
 
Address: _____________________________________________________________ 
 
Telephone: ___________________________________________________________ 
 
Age diagnosis was made: ________________________________________________ 
 
Diagnosis made by whom?:    
Name: _________________________________________________ 
 
Address: _________________________________________________ 
 
Subject’s personal physician or family doctor: 
 
Name: _________________________________________________ 
 
Address: _________________________________________________ 
 
What was diagnosis based on?  ______________________________________________ 
Was genetic testing done? ____________   
If so, where?________________________________________________________ 
What is subject’s	 Weight: ___________________________________________ 
 
  			 Height: ____________________________________________ 
 
       	      Medical problems: ____________________________________________   

____________________________________________________________________ 
 
____________________________________________________________________ 
 
____________________________________________________________________ 
 
____________________________________________________________________ 
 
____________________________________________________________________ 
 
   				   Yes/ 			 No/  			Ages of 
Signs or Symptoms:   		 Present	  	Absent  		Onset 
 
 Hair     		______		 ______ 		______ 
 
 	Skin Changes   	______		 ______ 		______  
 
 Teeth Delay   		______		 ______ 		______
 	
 Diabetes 		______		 ______ 		______
 		
 Chest pain    		______		 ______ 		______
 
Cardiovascular symptoms  	______		 ______ 		______
 
 Hip problems    	______		 ______ 		______  
 
 Other joint problems  ______		 ______ 		______  
 
 Other pain   		______		 ______ 		______
 
What specific tests have been done? 
 
___________________________________________________________________ 
 
___________________________________________________________________ 
 
Family: 
 Mother’s name:	 _____________________________________ 
 	
 Birth date:  		 _____________________________________ 
 	 Father’s name: 	  _____________________________________ 
	 
 Birth date:  		 _____________________________________ 
 
 Brothers and Sisters: 
 
  Name   	          Sex 	 Birth date            	    Medical Problems
 
1. _________________       ____        ________       ______________________________ 
2. _________________       ____        ________       ______________________________  
3. _________________       ____        ________       ______________________________ 
4. _________________       ____        ________       ______________________________ 
5. _________________       ____        ________       ______________________________ 
6. _________________       ____        ________       ______________________________ 

Are parents cousins or related in any way? If yes, how? 
___________________________________________________________________ 
 
___________________________________________________________________ 

Has subject been reported in medical literature? If so, where and when. 
___________________________________________________________________ 
 
___________________________________________________________________ 
 
___________________________________________________________________ 

Other history you may consider relevant. 
___________________________________________________________________ 
 
___________________________________________________________________ 
 
___________________________________________________________________ 

 
What are your needs/the child’s needs at this time? 
 
___________________________________________________________________ 
 
___________________________________________________________________ 
 
___________________________________________________________________