{"id":52800,"date":"2015-06-21T20:00:41","date_gmt":"2015-06-22T00:00:41","guid":{"rendered":"https:\/\/www.aroundfortwayne.com\/news\/?p=52800"},"modified":"2015-06-21T20:00:41","modified_gmt":"2015-06-22T00:00:41","slug":"parkview-research-center-to-help-develop-a-global-rare-disease-registry","status":"publish","type":"post","link":"https:\/\/aroundfortwayne.com\/news\/2015\/06\/21\/parkview-research-center-to-help-develop-a-global-rare-disease-registry\/","title":{"rendered":"Parkview Research Center to help develop a global Rare Disease Registry"},"content":{"rendered":"<p>&nbsp;<\/p>\n<p><img decoding=\"async\" class=\" aligncenter\" src=\"https:\/\/www.aroundfortwayne.com\/news\/wp-content\/uploads\/icons\/tParkview_Mirro_Center_logo.jpg\" alt=\"Parkview Mirro Center logo.\" \/><\/p>\n<p>&nbsp;<\/p>\n<p>News release from Parkview Health:<\/p>\n<blockquote><p><strong>Parkview Research Center selected for a financial award to help develop a global Rare Disease Registry<\/strong><\/p>\n<p><!--more--><\/p>\n<p>(June 19, 2015) &#8211; The Parkview Research Center located in the Parkview Mirro Center for Research &amp; Innovation has been selected for a Patient Centered Outcomes Research Institute (PCORI) financial award to strengthen research partnerships with the National Institutes of Health, the National Organization for Rare Diseases, and the Fibrous Dysplasia Foundation for the development of a global Rare Disease Registry.<\/p>\n<p>The Rare Disease Registry will facilitate collaboration between researchers, physicians and patients, forming new, and strengthening existing, research partnerships.<\/p>\n<p>As the number of patients with rare disorders is small and scattered widely geographically, online registries have become the gold standard for accelerating progress in rare disease research. When registries are patient-driven, they can be powerful tools that enable participants to tell their story while collecting information that can be used to improve health outcomes and develop appropriate clinical effectiveness research questions which are meaningful to patients and the healthcare community that serves them.<\/p>\n<p>Little is known about the rare orthopedic condition Fibrous Dysplasia and related disorders associated with excess bone growth. For patients, severe pain and deformity can occur; and, when the affected area is in the craniofacial region they can experience migraines, blindness, and interference with eating and painful social stigma that goes along with &#8220;looking different.&#8221; There is no cure for the condition, and current treatments are typically aimed at managing symptoms which can include severe pain and deformity.<\/p>\n<p>The Parkview Mirro Center for Research and Innovation&#8217;s mission is to provide opportunities that will open new doors and, potentially, revolutionize healthcare and save lives of individuals. This mission is an extension of the commitment that Parkview has made to the communities it serves throughout northeast Indiana, northwest Ohio, and south-central Michigan.<\/p>\n<p>PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.<\/p><\/blockquote>\n<p>&nbsp;<\/p>\n<h3>Related Images:<\/h3><div class=\"ngg-related-gallery\">\n\t\t\t<a href=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/aerialviewcore36in.jpg\"\n\t\t\ttitle=\"Aerial View rendering of the Parkview Regional Medical Center, under construction. Rendering courtesy of Parkview Health.\"\n\t\t\tclass='thickbox' rel='5201ce0c7e6481e0f45cd04c9df41f91' data-image-id=\"4669\" data-src=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/aerialviewcore36in.jpg\" data-thumbnail=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/thumbs\/thumbs_aerialviewcore36in.jpg\" data-title=\"Aerial View rendering\" data-description=\"Aerial View rendering of the Parkview Regional Medical Center, under construction. Rendering courtesy of Parkview Health.\">\n\t\t\t<img title=\"Aerial View rendering\"\n\t\t\t\talt=\"Aerial View rendering\"\n\t\t\t\tdata-image-id=\"4669\"\n\t\t\t\tsrc=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/thumbs\/thumbs_aerialviewcore36in.jpg\"\/>\n\t\t<\/a>\n\t\t\t<a href=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/prmcrendering.jpg\"\n\t\t\ttitle=\"Rendering of the Parkview Regional Medical Center, under construction. Rendering courtesy of Parkview Health.\"\n\t\t\tclass='thickbox' rel='5201ce0c7e6481e0f45cd04c9df41f91' data-image-id=\"4670\" data-src=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/prmcrendering.jpg\" data-thumbnail=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/thumbs\/thumbs_prmcrendering.jpg\" data-title=\"Parkview Regional Medical Center rendering\" data-description=\"Rendering of the Parkview Regional Medical Center, under construction. Rendering courtesy of Parkview Health.\">\n\t\t\t<img title=\"Parkview Regional Medical Center rendering\"\n\t\t\t\talt=\"Parkview Regional Medical Center rendering\"\n\t\t\t\tdata-image-id=\"4670\"\n\t\t\t\tsrc=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/thumbs\/thumbs_prmcrendering.jpg\"\/>\n\t\t<\/a>\n\t\t\t<a href=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/131117.jpg\"\n\t\t\ttitle=\"Share the Road billboard.  Photo taken May 13, 2010.\"\n\t\t\tclass='thickbox' rel='5201ce0c7e6481e0f45cd04c9df41f91' data-image-id=\"5330\" data-src=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/131117.jpg\" data-thumbnail=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/thumbs\/thumbs_131117.jpg\" data-title=\"2010\/05\/13: Share the Road billboard\" data-description=\"Share the Road billboard.  Photo taken May 13, 2010.\">\n\t\t\t<img title=\"2010\/05\/13: Share the Road billboard\"\n\t\t\t\talt=\"2010\/05\/13: Share the Road billboard\"\n\t\t\t\tdata-image-id=\"5330\"\n\t\t\t\tsrc=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/thumbs\/thumbs_131117.jpg\"\/>\n\t\t<\/a>\n\t\t\t<a href=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/131126.jpg\"\n\t\t\ttitle=\"Lisa Hollister, program manager, Parkview Trauma Center speaks at the Share the Road press conference on May 13, 2010.\"\n\t\t\tclass='thickbox' rel='5201ce0c7e6481e0f45cd04c9df41f91' data-image-id=\"5331\" data-src=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/131126.jpg\" data-thumbnail=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/thumbs\/thumbs_131126.jpg\" data-title=\"2010\/05\/13: Lisa Hollister\" data-description=\"Lisa Hollister, program manager, Parkview Trauma Center speaks at the Share the Road press conference on May 13, 2010.\">\n\t\t\t<img title=\"2010\/05\/13: Lisa Hollister\"\n\t\t\t\talt=\"2010\/05\/13: Lisa Hollister\"\n\t\t\t\tdata-image-id=\"5331\"\n\t\t\t\tsrc=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/thumbs\/thumbs_131126.jpg\"\/>\n\t\t<\/a>\n\t\t\t<a href=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/131131.jpg\"\n\t\t\ttitle=\"Mayor Tom Henry at the Share the Road press conference.  Photo taken May 13, 2010.\"\n\t\t\tclass='thickbox' rel='5201ce0c7e6481e0f45cd04c9df41f91' data-image-id=\"5332\" data-src=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/131131.jpg\" data-thumbnail=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/thumbs\/thumbs_131131.jpg\" data-title=\"2010\/05\/13: Mayor Tom Henry\" data-description=\"Mayor Tom Henry at the Share the Road press conference.  Photo taken May 13, 2010.\">\n\t\t\t<img title=\"2010\/05\/13: Mayor Tom Henry\"\n\t\t\t\talt=\"2010\/05\/13: Mayor Tom Henry\"\n\t\t\t\tdata-image-id=\"5332\"\n\t\t\t\tsrc=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/thumbs\/thumbs_131131.jpg\"\/>\n\t\t<\/a>\n\t\t\t<a href=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/131135.jpg\"\n\t\t\ttitle=\"Mayor Tom Henry at the Share the Road press conference.  Photo taken May 13, 2010.\"\n\t\t\tclass='thickbox' rel='5201ce0c7e6481e0f45cd04c9df41f91' data-image-id=\"5333\" data-src=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/131135.jpg\" data-thumbnail=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/thumbs\/thumbs_131135.jpg\" data-title=\"2010\/05\/13: Mayor Tom Henry\" data-description=\"Mayor Tom Henry at the Share the Road press conference.  Photo taken May 13, 2010.\">\n\t\t\t<img title=\"2010\/05\/13: Mayor Tom Henry\"\n\t\t\t\talt=\"2010\/05\/13: Mayor Tom Henry\"\n\t\t\t\tdata-image-id=\"5333\"\n\t\t\t\tsrc=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/thumbs\/thumbs_131135.jpg\"\/>\n\t\t<\/a>\n\t\t\t<a href=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/131139.jpg\"\n\t\t\ttitle=\"Wayne Township Trustee Rick Stevenson at the Share the Road press conference. Photo taken May 13, 2010.\"\n\t\t\tclass='thickbox' rel='5201ce0c7e6481e0f45cd04c9df41f91' data-image-id=\"5334\" data-src=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/131139.jpg\" data-thumbnail=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/thumbs\/thumbs_131139.jpg\" data-title=\"2010\/05\/13: Wayne Township Trustee Rick Stevenson\" data-description=\"Wayne Township Trustee Rick Stevenson at the Share the Road press conference. Photo taken May 13, 2010.\">\n\t\t\t<img title=\"2010\/05\/13: Wayne Township Trustee Rick Stevenson\"\n\t\t\t\talt=\"2010\/05\/13: Wayne Township Trustee Rick Stevenson\"\n\t\t\t\tdata-image-id=\"5334\"\n\t\t\t\tsrc=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/thumbs\/thumbs_131139.jpg\"\/>\n\t\t<\/a>\n\t\t\t<a href=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/131146.jpg\"\n\t\t\ttitle=\"Mayor Tom Henry at the Share the Road press conference.  Photo taken May 13, 2010.\"\n\t\t\tclass='thickbox' rel='5201ce0c7e6481e0f45cd04c9df41f91' data-image-id=\"5335\" data-src=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/131146.jpg\" data-thumbnail=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/thumbs\/thumbs_131146.jpg\" data-title=\"2010\/05\/13: Mayor Tom Henry\" data-description=\"Mayor Tom Henry at the Share the Road press conference.  Photo taken May 13, 2010.\">\n\t\t\t<img title=\"2010\/05\/13: Mayor Tom Henry\"\n\t\t\t\talt=\"2010\/05\/13: Mayor Tom Henry\"\n\t\t\t\tdata-image-id=\"5335\"\n\t\t\t\tsrc=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/thumbs\/thumbs_131146.jpg\"\/>\n\t\t<\/a>\n\t\t\t<a href=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/131149.jpg\"\n\t\t\ttitle=\"Share the Road press conference on May 13, 2010.\"\n\t\t\tclass='thickbox' rel='5201ce0c7e6481e0f45cd04c9df41f91' data-image-id=\"5336\" data-src=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/131149.jpg\" data-thumbnail=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/thumbs\/thumbs_131149.jpg\" data-title=\"2010\/05\/13: Share the Road press conference\" data-description=\"Share the Road press conference on May 13, 2010.\">\n\t\t\t<img title=\"2010\/05\/13: Share the Road press conference\"\n\t\t\t\talt=\"2010\/05\/13: Share the Road press conference\"\n\t\t\t\tdata-image-id=\"5336\"\n\t\t\t\tsrc=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/thumbs\/thumbs_131149.jpg\"\/>\n\t\t<\/a>\n\t\t\t<a href=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/131152.jpg\"\n\t\t\ttitle=\"Lori Keys, Executive Director of the Aboite New Trails, speaks at the Share the Road press conference on May 13, 2010.\"\n\t\t\tclass='thickbox' rel='5201ce0c7e6481e0f45cd04c9df41f91' data-image-id=\"5337\" data-src=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/131152.jpg\" data-thumbnail=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/thumbs\/thumbs_131152.jpg\" data-title=\"2010\/05\/13: Lori Keys\" data-description=\"Lori Keys, Executive Director of the Aboite New Trails, speaks at the Share the Road press conference on May 13, 2010.\">\n\t\t\t<img title=\"2010\/05\/13: Lori Keys\"\n\t\t\t\talt=\"2010\/05\/13: Lori Keys\"\n\t\t\t\tdata-image-id=\"5337\"\n\t\t\t\tsrc=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/cityoffw\/thumbs\/thumbs_131152.jpg\"\/>\n\t\t<\/a>\n\t\t\t<a href=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/mike_packnett.jpg\"\n\t\t\ttitle=\"Mike Packnett, Parkview Health CEO. Courtesy photo.\"\n\t\t\tclass='thickbox' rel='5201ce0c7e6481e0f45cd04c9df41f91' data-image-id=\"5493\" data-src=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/mike_packnett.jpg\" data-thumbnail=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/thumbs\/thumbs_mike_packnett.jpg\" data-title=\"Mike Packnett\" data-description=\"Mike Packnett, Parkview Health CEO. Courtesy photo.\">\n\t\t\t<img title=\"Mike Packnett\"\n\t\t\t\talt=\"Mike Packnett\"\n\t\t\t\tdata-image-id=\"5493\"\n\t\t\t\tsrc=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/thumbs\/thumbs_mike_packnett.jpg\"\/>\n\t\t<\/a>\n\t\t\t<a href=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/cancer_care_awards.jpg\"\n\t\t\ttitle=\"Parkview\u2019s Comprehensive Cancer Center third-annual Cancer Care Awards which honor the dedication, determination, innovation, sacrifices, and courage of those whose efforts improve the quality of life for people who have cancer. From left to right: Kristi Johnston, Debbie A. Johnston Foundation; Rae Gonterman, RN, MSN, NE-BC, senior vice president, Parkview Health Cancer Service Line; and Beth Goldsmith.\"\n\t\t\tclass='thickbox' rel='5201ce0c7e6481e0f45cd04c9df41f91' data-image-id=\"6182\" data-src=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/cancer_care_awards.jpg\" data-thumbnail=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/thumbs\/thumbs_cancer_care_awards.jpg\" data-title=\"Parkview Cancer Care Awards\" data-description=\"Parkview\u2019s Comprehensive Cancer Center third-annual Cancer Care Awards which honor the dedication, determination, innovation, sacrifices, and courage of those whose efforts improve the quality of life for people who have cancer. From left to right: Kristi Johnston, Debbie A. Johnston Foundation; Rae Gonterman, RN, MSN, NE-BC, senior vice president, Parkview Health Cancer Service Line; and Beth Goldsmith.\">\n\t\t\t<img title=\"Parkview Cancer Care Awards\"\n\t\t\t\talt=\"Parkview Cancer Care Awards\"\n\t\t\t\tdata-image-id=\"6182\"\n\t\t\t\tsrc=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/thumbs\/thumbs_cancer_care_awards.jpg\"\/>\n\t\t<\/a>\n\t\t\t<a href=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/mirro_center.jpg\"\n\t\t\ttitle=\"The Mirro Family Research and Education Center which will be built on the Parkview Regional Medical Center campus. Courtesy image.\"\n\t\t\tclass='thickbox' rel='5201ce0c7e6481e0f45cd04c9df41f91' data-image-id=\"6469\" data-src=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/mirro_center.jpg\" data-thumbnail=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/thumbs\/thumbs_mirro_center.jpg\" data-title=\"The Mirro Family Research and Education Center\" data-description=\"The Mirro Family Research and Education Center which will be built on the Parkview Regional Medical Center campus. Courtesy image.\">\n\t\t\t<img title=\"The Mirro Family Research and Education Center\"\n\t\t\t\talt=\"The Mirro Family Research and Education Center\"\n\t\t\t\tdata-image-id=\"6469\"\n\t\t\t\tsrc=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/thumbs\/thumbs_mirro_center.jpg\"\/>\n\t\t<\/a>\n\t\t\t<a href=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/067a9918_resized.jpg\"\n\t\t\ttitle=\"The newly remodeled Parkview Hospital Randallia main entrance. Courtesy photo.\"\n\t\t\tclass='thickbox' rel='5201ce0c7e6481e0f45cd04c9df41f91' data-image-id=\"8321\" data-src=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/067a9918_resized.jpg\" data-thumbnail=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/thumbs\/thumbs_067a9918_resized.jpg\" data-title=\"Parkview Hospital Randallia main entrance\" data-description=\"The newly remodeled Parkview Hospital Randallia main entrance. Courtesy photo.\">\n\t\t\t<img title=\"Parkview Hospital Randallia main entrance\"\n\t\t\t\talt=\"Parkview Hospital Randallia main entrance\"\n\t\t\t\tdata-image-id=\"8321\"\n\t\t\t\tsrc=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/thumbs\/thumbs_067a9918_resized.jpg\"\/>\n\t\t<\/a>\n\t\t\t<a href=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/067a9918_resized.jpg\"\n\t\t\ttitle=\"Renovations at Parkview Randallia, photo courtesy of Parkview Health.\"\n\t\t\tclass='thickbox' rel='5201ce0c7e6481e0f45cd04c9df41f91' data-image-id=\"8578\" data-src=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/067a9918_resized.jpg\" data-thumbnail=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/thumbs\/thumbs_067a9918_resized.jpg\" data-title=\"Renovations at Parkview Randallia\" data-description=\"Renovations at Parkview Randallia, photo courtesy of Parkview Health.\">\n\t\t\t<img title=\"Renovations at Parkview Randallia\"\n\t\t\t\talt=\"Renovations at Parkview Randallia\"\n\t\t\t\tdata-image-id=\"8578\"\n\t\t\t\tsrc=\"https:\/\/aroundfortwayne.com\/news\/wp-content\/gallery\/parkview\/thumbs\/thumbs_067a9918_resized.jpg\"\/>\n\t\t<\/a>\n\t<\/div>","protected":false},"excerpt":{"rendered":"<p>The Parkview Research Center located in the Parkview Mirro Center for Research &amp; Innovation has been selected to develop a global Rare Disease Registry.<\/p>\n","protected":false},"author":2,"featured_media":35271,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"ngg_post_thumbnail":0,"footnotes":""},"categories":[1716],"tags":[13882,23,13883,1955,610,5710,13884,13885,13886],"class_list":["post-52800","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news-releases","tag-fibrous-dysplasia-foundation","tag-fort-wayne-indiana","tag-national-organization-for-rare-diseases","tag-nih-national-institutes-of-health","tag-parkview-health","tag-parkview-mirro-center-for-research-and-innovation","tag-parkview-research-center","tag-patient-centered-outcomes-research-institute","tag-rare-disease-registry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.3 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Parkview Research Center to help develop a global Rare Disease Registry - 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