BOONTON, N.J., Feb. 21, 2017 /PRNewswire/ -- Soft Bones Inc., an organization dedicated to providing information, education, and support to those affected by hypophosphatasia, announces that the HPP community has reached a milestone with 100 patients who have enrolled in an international patient registry. Reaching this milestone in a rare disease state is noteworthy because it can provide important insights, ultimately accelerating research in HPP.
In July 2016, Soft Bones partnered with the Coordination of Rare Diseases at Sanford (CoRDS) to host a patient registry for individuals diagnosed with (HPP) and carriers of the disease. CoRDS is a centralized, international patient registry for all rare disease. It is a service of Sanford Research, headquartered in Sioux Falls, S.D.
"In rare disease research, one of the biggest challenges is having a cohort of patients available for researchers to access while conducting their work," says Angela Vanveldhuizen from CoRDS. "The HPP patient registry allows researchers with a vested interest in HPP a single point of entry to receive access to data, without compromising a patient's identity."
Anyone diagnosed with any type of HPP or those who are carriers, diagnosed or suspect they may have the metabolic bone disease may participate in the registry. To enroll, visit http://www.sanfordresearch.org/cordsregistryform, fill out the form, and specify that you are interested in joining the disease-specific Soft Bones International Hypophosphatasia Registry. Participation is voluntary, and those who enroll may withdraw any time. Soft Bones will not have access to the names or any information that allows individuals associated with the data to be identified.
Researchers who are conducting an IRB-approved investigation concerning hypophosphatasia are invited to apply for access to the registry. Approved researchers can view the de-identified patient database for research purposes and can request that participants be contacted on their behalf to let them know about clinical trials or research studies that they may be eligible for.
The Registry utilizes the GRDR Common Data Elements recommended by the NIH/NCATS GRDR® Program. To apply for access to the International HPP Contact Registry, complete the CoRDS Researcher Access Request Form and return it to [email protected].
ABOUT HYPOPHOSPHATASIAHypophosphatasia is an inherited, ultra-rare, metabolic (chemical) bone disease of broad-ranging severity that causes life-threatening disease in approximately one per 100,000 live births. Depending on the severity of the skeletal disease, symptoms can include deformity of the limbs and chest, pneumonia, and recurrent fractures. While there is currently no cure for hypophosphatasia, treatment is directed towards preventing or correcting the symptoms or complications.
About Sanford Research Sanford Research is a non-profit research organization and is part of Sanford Health, an integrated health system headquartered in the Dakotas. Sanford Health is one of the largest health systems in the nation with a presence in nine states and three countries. More than $600 million in gifts from Denny Sanford has provided for an expansion of research initiatives in type 1 diabetes, breast cancer and genomics in internal medicine.
With a team of more than 200 researchers, Sanford Research comprises several research centers, including Children's Health Research, Edith Sanford Breast Center, Cancer Biology, Center for Health Outcomes and Prevention and Sanford Sports Science Institute.
ABOUT SOFT BONES, INC.Soft Bones was founded in 2009 to provide information and to establish a forum to educate, empower, and connect patients living with hypophosphatasia, their families, and caregivers. The Foundation also promotes research of rare bone disease through awareness and fundraising efforts. Under the leadership of Deborah Nettune Sittig, Soft Bones has raised awareness around the world, including advocating for the disease to receive the policy recognition and research funding it deserves, by bringing attention to children affected by hypophosphatasia around the globe.
Contact:Media Inquiries:Soft Bones, Inc.Denise GoodbarPhone: (973) 723-0549
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In July 2016, Soft Bones partnered with the Coordination of Rare Diseases at Sanford (CoRDS) to host a patient registry for individuals diagnosed with (HPP) and carriers of the disease. CoRDS is a centralized, international patient registry for all rare disease. It is a service of Sanford Research, headquartered in Sioux Falls, S.D.
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"In rare disease research, one of the biggest challenges is having a cohort of patients available for researchers to access while conducting their work," says Angela Vanveldhuizen from CoRDS. "The HPP patient registry allows researchers with a vested interest in HPP a single point of entry to receive access to data, without compromising a patient's identity."
Anyone diagnosed with any type of HPP or those who are carriers, diagnosed or suspect they may have the metabolic bone disease may participate in the registry. To enroll, visit http://www.sanfordresearch.org/cordsregistryform, fill out the form, and specify that you are interested in joining the disease-specific Soft Bones International Hypophosphatasia Registry. Participation is voluntary, and those who enroll may withdraw any time. Soft Bones will not have access to the names or any information that allows individuals associated with the data to be identified.
Researchers who are conducting an IRB-approved investigation concerning hypophosphatasia are invited to apply for access to the registry. Approved researchers can view the de-identified patient database for research purposes and can request that participants be contacted on their behalf to let them know about clinical trials or research studies that they may be eligible for.
The Registry utilizes the GRDR Common Data Elements recommended by the NIH/NCATS GRDR® Program. To apply for access to the International HPP Contact Registry, complete the CoRDS Researcher Access Request Form and return it to [email protected].
ABOUT HYPOPHOSPHATASIAHypophosphatasia is an inherited, ultra-rare, metabolic (chemical) bone disease of broad-ranging severity that causes life-threatening disease in approximately one per 100,000 live births. Depending on the severity of the skeletal disease, symptoms can include deformity of the limbs and chest, pneumonia, and recurrent fractures. While there is currently no cure for hypophosphatasia, treatment is directed towards preventing or correcting the symptoms or complications.
About Sanford Research Sanford Research is a non-profit research organization and is part of Sanford Health, an integrated health system headquartered in the Dakotas. Sanford Health is one of the largest health systems in the nation with a presence in nine states and three countries. More than $600 million in gifts from Denny Sanford has provided for an expansion of research initiatives in type 1 diabetes, breast cancer and genomics in internal medicine.
With a team of more than 200 researchers, Sanford Research comprises several research centers, including Children's Health Research, Edith Sanford Breast Center, Cancer Biology, Center for Health Outcomes and Prevention and Sanford Sports Science Institute.
ABOUT SOFT BONES, INC.Soft Bones was founded in 2009 to provide information and to establish a forum to educate, empower, and connect patients living with hypophosphatasia, their families, and caregivers. The Foundation also promotes research of rare bone disease through awareness and fundraising efforts. Under the leadership of Deborah Nettune Sittig, Soft Bones has raised awareness around the world, including advocating for the disease to receive the policy recognition and research funding it deserves, by bringing attention to children affected by hypophosphatasia around the globe.
Contact:Media Inquiries:Soft Bones, Inc.Denise GoodbarPhone: (973) 723-0549
To view the original version on PR Newswire, visit:http://www.prnewswire.com/news-releases/hypophosphatasia-patient-registry-reaches-milestone-with-100-patients-300410469.html
SOURCE Soft Bones Inc.
