There is a phishing scam going on now which targets scleroderma patients, posing as the Scleroderma Family and DNA Registry. The scam sends users to a fake site, sclerodermaregistry.com, and asks them to enter their private data. Contact Marilyn Perry by email, [email protected], for any questions regarding the registry or scam. Posted 04/21/2011.
You may join all of the research registries and quality of life studies that you are eligible for. It's not like clinical trials, where you are limited to just one.
Scleroderma Family Registry and DNA Repository. The Scleroderma Family Registry and DNA Repository is a research study whose objective is to identify the genes that influence scleroderma. Families with only one case of scleroderma (singleton families) and those with more than one case (multiplex families) will be included in the study.
Also See: Scleroderma Research Registries ISN.
The Scleroderma Family Registry and DNA Repository contains information including the the patient's name, gender, ethnic background, optional social security number, address, phone number, date of birth, as well as information such as date of diagnosis, type and severity of scleroderma, and results of some laboratory tests and x-rays. All information is kept confidential.
In order to accomplish this objective, the project has the following specific objectives:
1. To determine the precise frequency that scleroderma occurs in more than one family member and to determine the frequency that other autoimmune diseases (like lupus) occur in families with at least one scleroderma case.
2. To conduct a nationwide search to identify and enroll multiplex families.
3. To collect and store DNA and serum on 350 singleton families and 150 multiplex families collecting samples from friends and in-laws as unrelated controls.
4. In collaboration with Dr. Frank Arnett and Dr. John Reveille of the University of Texas, Houston, and Dr. Li Jin at the University of Cincinnati to identify the genes conferring susceptibility to and expression of SSc using high resolution linkage maps consisting of highly polymorphic microsatellite markers and single nucleotide polymorphisms (SNPs) for disease linkage in both simplex and multiplex SSc families.
To advertise the availability of the DNA Registry as a resource to the scientific community and to invite proposals from this group to study Scleroderma and other autoimmune disease related genes.
To enroll, contact:
Coordinator of the Scleroderma Family Registry
University of Texas Health Science Center at Houston
6431 Fannin Street
Houston, TX 77030
Toll Free: 1-800-736-6864
Email: [email protected]
This page was posted at the request of Dr. Maureen Mayes, who is Principal Investigator of the Scleroderma Family Registry and DNA Repository. The text for this page was taken from their brochure entitled, "Scleroderma Family Registry and DNA Repository."
Dr. Mayes is Professor of Internal Medicine in the Division of Rheumatology at the University of Texas Health Science Center at Houston Medical School.
No, all you have to do is sign the consent form that we will mail to you and provide the information requested. We do ask you to permit someone from the Registry to review your medical record at your doctor's office or at a hospital where you were admitted in order to get information about laboratory tests and x-rays.
Yes, we will provide mailing kits to be taken to your doctor's office and have the blood drawn at your convenience. Simply place in the mail to return to us. The registry will prepay shipping costs.
Yes, we will also include children. A parent or guardian must sign the consent form for the child to be enrolled in the Registry.
No, the Registry will only collect Blood and DNA samples.
The National Institutes of Health (NIH) through the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) are providing the funds to establish the Registry for five years.
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
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