Ignite Creation Date:
2024-05-05 @ 11:33 AM
Last Modification Date:
2024-10-26 @ 9:09 AM
Study NCT ID:
NCT00074568
Status:
COMPLETED
Last Update Posted:
2022-09-27
First Post:
2003-12-16
Brief Title:
Scleroderma Registry
Sponsor:
National Institute of Arthritis and Musculoskeletal and Skin Diseases NIAMS
Organization:
National Institute of Arthritis and Musculoskeletal and Skin Diseases NIAMS
Study Overview
Official Title:
Scleroderma Family Registry and DNA Repository
Status:
COMPLETED
Status Verified Date:
2022-09
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
Registry
Brief Summary:
Scleroderma is likely caused by a combination of factors including an external trigger infection or other exposure and a genetic predisposition The Scleroderma Registry will conduct genetic analyses for disease-related genes in patients with scleroderma and their family members parents brothers and sisters
Detailed Description:
Scleroderma refers to a group of diseases that involve the abnormal growth of connective tissue which supports the skin and internal organs Scleroderma can affect the skin making it hard and tight it can also damage the blood vessels and internal organs such as the heart lungs and kidneys Estimates for the number of people in the United States with the systemic body-wide form of scleroderma range from 40000 to 165000 The number of people with all scleroderma-related disorders is between 250000 and 992500
Researchers believe that several factors interact to produce scleroderma including abnormal immune activity potential environmental triggers and genetic makeup Scleroderma is not passed on from parents to child but certain genes may make a person more likely to develop the disease The goals of this project are to identify the genes that influence disease susceptibility and expression in systemic scleroderma and to establish a repository of DNA plasma and serum samples from single case scleroderma families multicase families and healthy unrelated volunteers for the use of researchers interested in studying this disease
Participants in the Registry will have a phone interview regarding disease characteristics and family history Participants will be sent a blood kit to get a blood sample drawn locally for shipment to the Registry lab Blood samples will be made available anonymously for studies by researchers around the country In some cases participants will be asked to sign a release of medical information so that medical records can be obtained to verify the diagnosis
As of May 2009 this study is no longer enrolling family members
Researchers believe that several factors interact to produce scleroderma including abnormal immune activity potential environmental triggers and genetic makeup Scleroderma is not passed on from parents to child but certain genes may make a person more likely to develop the disease The goals of this project are to identify the genes that influence disease susceptibility and expression in systemic scleroderma and to establish a repository of DNA plasma and serum samples from single case scleroderma families multicase families and healthy unrelated volunteers for the use of researchers interested in studying this disease
Participants in the Registry will have a phone interview regarding disease characteristics and family history Participants will be sent a blood kit to get a blood sample drawn locally for shipment to the Registry lab Blood samples will be made available anonymously for studies by researchers around the country In some cases participants will be asked to sign a release of medical information so that medical records can be obtained to verify the diagnosis
As of May 2009 this study is no longer enrolling family members
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
None
Is a FDA Regulated Device?:
None
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None
Secondary IDs
| Secondary ID | Type | Domain | Link |
|---|---|---|---|
| N01AR002251-000 | NIH | None | None |
| NO1-AR-0-2251 | US NIH GrantContract | None | httpsreporternihgovquickSearchN01AR002251-000 |