How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study
Simpson, Amy, Bloom, Lara, Fulop, Naomi J, Hudson, Emma, Leeson-Beevers, Kerry, Morris, Stephen, Ramsay, Angus I G, Sutcliffe, Alastair G, Walton, Holly, Hunter, Amy
Published in Orphanet journal of rare diseases (10.02.2021)
Published in Orphanet journal of rare diseases (10.02.2021)
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Journal Article
Development of models of care coordination for rare conditions: a qualitative study
Walton, Holly, Simpson, Amy, Ramsay, Angus I G, Hunter, Amy, Jones, Jennifer, Ng, Pei Li, Leeson-Beevers, Kerry, Bloom, Lara, Kai, Joe, Kokocinska, Maria, Sutcliffe, Alastair G, Morris, Stephen, Fulop, Naomi J
Published in Orphanet journal of rare diseases (14.02.2022)
Published in Orphanet journal of rare diseases (14.02.2022)
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Journal Article
Preferences for coordinated care for rare diseases: discrete choice experiment
Morris, Stephen, Walton, Holly, Simpson, Amy, Leeson-Beevers, Kerry, Bloom, Lara, Hunter, Amy, Ramsay, Angus I G, Fulop, Naomi J, Chitty, Lyn S, Kai, Joe, Sutcliffe, Alastair G, Kokocinska, Maria, Kerecuk, Larissa, Taylor, Christine A, Ng, Pei Li
Published in Orphanet journal of rare diseases (09.09.2024)
Published in Orphanet journal of rare diseases (09.09.2024)
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Journal Article
Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals
Walton, Holly, Ng, Pei Li, Simpson, Amy, Bloom, Lara, Chitty, Lyn S, Fulop, Naomi J, Hunter, Amy, Jones, Jennifer, Kai, Joe, Kerecuk, Larissa, Kokocinska, Maria, Leeson-Beevers, Kerry, Parkes, Sharon, Ramsay, Angus I G, Sutcliffe, Alastair, Taylor, Christine, Morris, Stephen
Published in Orphanet journal of rare diseases (23.11.2023)
Published in Orphanet journal of rare diseases (23.11.2023)
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Journal Article
Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study
Walton, Holly, Simpson, Amy, Ramsay, Angus I G, Hudson, Emma, Hunter, Amy, Jones, Jennifer, Ng, Pei Li, Leeson-Beevers, Kerry, Bloom, Lara, Kai, Joe, Kerecuk, Larissa, Kokocinska, Maria, Sutcliffe, Alastair G, Morris, Stephen, Fulop, Naomi J
Published in Orphanet journal of rare diseases (20.04.2022)
Published in Orphanet journal of rare diseases (20.04.2022)
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Journal Article
Survey of Ehlers‒Danlos Patients’ ophthalmic surgery experiences
Louie, Anita, Meyerle, Catherine, Francomano, Clair, Srikumaran, Divya, Merali, Farhan, Doyle, Jefferson J., Bower, Kraig, Bloom, Lara, Boland, Michael V., Mahoney, Nicholas, Daoud, Yassine, Singman, Eric L.
Published in Molecular genetics & genomic medicine (01.04.2020)
Published in Molecular genetics & genomic medicine (01.04.2020)
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Journal Article
Co-ordinated care for people affected by rare diseases: the CONCORD mixed-methods study
Morris, Stephen, Hudson, Emma, Bloom, Lara, Chitty, Lyn S, Fulop, Naomi J, Hunter, Amy, Jones, Jennifer, Kai, Joe, Kerecuk, Larissa, Kokocinska, Maria, Leeson-Beevers, Kerry, Ng, Pei Li, Parkes, Sharon, Ramsay, Angus IG, Simpson, Amy, Sutcliffe, Alastair, Taylor, Christine, Walton, Holly
Published in Health and social care delivery research (01.03.2022)
Published in Health and social care delivery research (01.03.2022)
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Journal Article
P084 EDS ECHO: virtual case based learning in the assessment and management of Ehlers-Danlos syndrome and hypermobility spectrum disorders
Hakim, Alan, Schubart, Jane, Francomano, Clair, Bascom, Rebecca, Bloom, Lara
Published in Rheumatology (Oxford, England) (25.04.2021)
Published in Rheumatology (Oxford, England) (25.04.2021)
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Journal Article
The power of patient‐led global collaboration
Bloom, Lara, Schubart, Jane, Bascom, Rebecca, Hakim, Alan, Francomano, Clair A.
Published in American journal of medical genetics. Part C, Seminars in medical genetics (01.12.2021)
Published in American journal of medical genetics. Part C, Seminars in medical genetics (01.12.2021)
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Journal Article
Initial description and evaluation of EDS ECHO: An international effort to improve care for people with the Ehlers‐Danlos syndromes and hypermobility spectrum disorders
Schubart, Jane R., Bascom, Rebecca, Francomano, Clair A., Bloom, Lara, Hakim, Alan J.
Published in American journal of medical genetics. Part C, Seminars in medical genetics (01.12.2021)
Published in American journal of medical genetics. Part C, Seminars in medical genetics (01.12.2021)
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Journal Article
Assessment of the Information Sources and Interest in Research Collaboration Among Individuals with Vascular Ehlers-Danlos Syndrome
Shalhub, Sherene, Sage, Liz, Demasi, John, Wallace, Stephanie E., Fulton, Daphne S., Bloom, Lara, Driessnack, Martha, Byers, Peter H.
Published in Annals of vascular surgery (01.01.2020)
Published in Annals of vascular surgery (01.01.2020)
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Journal Article
Telehealth for rare disease care, research, and education across the globe: A review of the literature by the IRDiRC telehealth task force
Chen, Faye H., Hartman, Adam L., Letinturier, Mary Catherine V., Antoniadou, Victoria, Baynam, Gareth, Bloom, Lara, Crimi, Marco, Della Rocca, Maria G., Didato, Giuseppe, Houge, Sofia Douzgou, Jonker, Anneliene, Kawome, Martina, Mueller, Friederike, O'Brien, James, Puri, Ratna Dua, Ryan, Nuala, Thong, Meow-Keong, Tumienė, Birutė, Parisi, Melissa A.
Published in European journal of medical genetics (01.12.2024)
Published in European journal of medical genetics (01.12.2024)
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Journal Article
The mental health impact of aortic dissection
Ilonzo, Nicole, Taubenfeld, Ella, Yousif, Maisoon D., Henoud, Claudine, Howitt, Jake, Wohlauer, Max, D'Oria, Mario, MacCarrick, Gretchen, Case, Melanie, Cotter, Novelett E., David, Carmen C., Fasano, Mark, Goldenberg, Richard, Howitt, Jake, Söderlund, Timo T., Trotter, Debra, Rabin, Asaf, Boehler-Tatman, Mattie, Russo, Melissa L., Drudi, Laura Marie, Marks, Laura L., Yousif, Maisoon D., Hoffstaetter, Tabea, Taubenfeld, Ella, Vemulapalli, Sreekanth, Campos, Chrisanne S., Rusche, Lindsey, Pena, Robert C.F., Mussa, Firas F., MacCarrick , Gretchen, Goldsborough, Earl, Samuel, Christeen, Xu, Lillian, Mouawad, Nicolas J., Yassa, Eanas S., Teng, Xiaoyi, Politano, Amani, Teindl, Jesse, Bloom, Lara, Gluck, Rebecca, O'Neal, Meredith Ford, Grima, Josephine, Masciale, Eileen, Ota, Takeyoshi, Wright, Katelyn, Hakim, Alan J., Owens, Gareth, Arnaoutakis, George J., Judelson, Dejah, D'Oria, Mario, Rio-Sola, Lurdes del, Ajalat, Mark, Chau, Marvin, Talutis, Stephanie D., Woo, Karen, Wohlauer, Max V., Yi, JeniannA, Eagle, Kim A., Bowman, Marion A. Hofmann, MS, Eva Kline-Rogers, Kim, Hyein, Henoud, Claudine, Damrauer, Scott, Krol, Emilia, Afifi, Rana O., Cecchi, Alana C., Drake, Madeline, Estrera, Anthony, Hebert, Avery M, Milewicz, Dianna M., Prakash, Siddharth K., Roberts, Aaron W., Sandhu, Harleen, Smith-Washington, Akili, Tanaka, Akiko, Watson, Jacob, Ahmad, Myra, Albright, Catherine M., Burke, Christopher R., Byers, Peter H., Kennedy, L'Oreal, Lawrence, Sarah O., Lee, Jenney R., Medina, Jonathan, Nishath, Thamanna, Pham, Julie, Segal, Courtney, Shalhub, Sherene, Soto, Michael, Catalan, Linell, Patterson, Megan, Ilonzo, Nicole
Published in Seminars in vascular surgery (01.03.2022)
Published in Seminars in vascular surgery (01.03.2022)
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Journal Article
Aortic dissection in pregnancy and the postpartum period
Russo, Melissa, Boehler-Tatman, Mattie, Albright, Catherine, David, Carmen, Kennedy, L'Oreal, Roberts, Aaron W., Shalhub, Sherene, Afifi, Rana, Case, Melanie, Cotter, Novelett E., David, Carmen C., Fasano, Mark, Goldenberg, Richard, Howitt, Jake, Söderlund, Timo T., Trotter, Debra, Rabin, Asaf, Boehler-Tatman, Mattie, Russo, Melissa L., Drudi, Laura Marie, Marks, Laura L., Yousif, Maisoon D., Hoffstaetter, Tabea, Taubenfeld, Ella, Vemulapalli, Sreekanth, Campos, Chrisanne S., Rusche, Lindsey, Pena, Robert C.F., Mussa, Firas F., MacCarrick, Gretchen, Goldsborough, Earl, Samuel, Christeen, Xu, Lillian, Mouawad, Nicolas J., Yassa, Eanas S., Teng, Xiaoyi, Politano, Amani, Teindl, Jesse, Bloom, Lara, Gluck, Rebecca, O'Neal, Meredith Ford, Grima, Josephine, Masciale, Eileen, Ota, Takeyoshi, Wright, Katelyn, Hakim, Alan J., Owens, Gareth, Arnaoutakis, George J., Judelson, Dejah, D'Oria, Mario, Rio-Sola, Lurdes del, Ajalat, Mark, Chau, Marvin, Talutis, Stephanie D., Woo, Karen, Wohlauer, Max V., Yi, JeniannA, Eagle, Kim A., Bowman, Marion A. Hofmann, MS, Eva Kline-Rogers, Kim, Hyein, Henoud, Claudine, Damrauer, Scott, Krol, Emilia, Afifi, Rana O., Cecchi, Alana C., Drake, Madeline, Estrera, Anthony, Hebert, Avery M, Milewicz, Dianna M., Prakash, Siddharth K., Roberts, Aaron W., Sandhu, Harleen, Smith-Washington, Akili, Tanaka, Akiko, Watson, Jacob, Ahmad, Myra, Albright, Catherine M., Burke, Christopher R., Byers, Peter H., Kennedy, L'Oreal, Lawrence, Sarah O., Lee, Jenney R., Medina, Jonathan, Nishath, Thamanna, Pham, Julie, Segal, Courtney, Shalhub, Sherene, Soto, Michael, Catalan, Linell, Patterson, Megan, Ilonzo, Nicole
Published in Seminars in vascular surgery (01.03.2022)
Published in Seminars in vascular surgery (01.03.2022)
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Journal Article
Current state and future directions of genomic medicine in aortic dissection: A path to prevention and personalized care
Cecchi, Alana C., Drake, Madeline, Campos, Chrisanne, Howitt, Jake, Medina, Jonathan, Damrauer, Scott M., Shalhub, Sherene, Milewicz, Dianna M., Case, Melanie, Cotter, Novelett E., David, Carmen C., Fasano, Mark, Goldenberg, Richard, Howitt, Jake, Söderlund, Timo T., Trotter, Debra, Rabin, Asaf, Boehler-Tatman, Mattie, Russo, Melissa L., Drudi, Laura Marie, Marks, Laura L., Yousif, Maisoon D., Hoffstaetter, Tabea, Taubenfeld, Ella, Vemulapalli, Sreekanth, Campos, Chrisanne S., Rusche, Lindsey, Pena, Robert C.F., Mussa, Firas F., MacCarrick, Gretchen, Goldsborough, Earl, Samuel, Christeen, Xu, Lillian, Mouawad, Nicolas J., Yassa, Eanas S., Teng, Xiaoyi, Politano, Amani, Teindl, Jesse, Bloom, Lara, Gluck, Rebecca, O'Neal, Meredith Ford, Grima, Josephine, Masciale, Eileen, Ota, Takeyoshi, Wright, Katelyn, Hakim, Alan J., Owens, Gareth, Arnaoutakis, George J., Judelson, Dejah, D'Oria, Mario, Rio-Sola, Lurdes del, Ajalat, Mark, Chau, Marvin, Talutis, Stephanie D., Woo, Karen, Wohlauer, Max V., Yi, JeniannA, Eagle, Kim A., Bowman, Marion A. Hofmann, MS, Eva Kline-Rogers, Kim, Hyein, Henoud, Claudine, Damrauer, Scott, Krol, Emilia, Afifi, Rana O., Cecchi, Alana C., Drake, Madeline, Estrera, Anthony, Hebert, Avery M, Milewicz, Dianna M., Prakash, Siddharth K., Roberts, Aaron W., Sandhu, Harleen, Smith-Washington, Akili, Tanaka, Akiko, Watson, Jacob, Ahmad, Myra, Albright, Catherine M., Burke, Christopher R., Byers, Peter H., Kennedy, L'Oreal, Lawrence, Sarah O., Lee, Jenney R., Medina, Jonathan, Nishath, Thamanna, Pham, Julie, Segal, Courtney, Shalhub, Sherene, Soto, Michael, Catalan, Linell, Patterson, Megan, Ilonzo, Nicole
Published in Seminars in vascular surgery (01.03.2022)
Published in Seminars in vascular surgery (01.03.2022)
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Journal Article
Implementation of telemedicine in the care of patients with aortic dissection
Nishath, Thamanna, Wright, Katie, Burke, Christopher R., Teng, Xiaoyi, Cotter, Novelett, Yi, Jeniann A., Drudi, Laura M., Case, Melanie, Cotter, Novelett E., David, Carmen C., Fasano, Mark, Goldenberg, Richard, Howitt, Jake, Söderlund, Timo T., Trotter, Debra, Rabin, Asaf, Boehler-Tatman, Mattie, Russo, Melissa L., Drudi, Laura Marie, Marks, Laura L., Yousif, Maisoon D., Hoffstaetter, Tabea, Taubenfeld, Ella, Vemulapalli, Sreekanth, Campos, Chrisanne S., Rusche, Lindsey, Pena, Robert C.F., Mussa, Firas F., MacCarrick, Gretchen, Goldsborough, Earl, Samuel, Christeen, Xu, Lillian, Mouawad, Nicolas J., Yassa, Eanas S., Teng, Xiaoyi, Politano, Amani, Teindl, Jesse, Bloom, Lara, Gluck, Rebecca, O'Neal, Meredith Ford, Grima, Josephine, Masciale, Eileen, Ota, Takeyoshi, Wright, Katelyn, Hakim, Alan J., Owens, Gareth, Arnaoutakis, George J., Judelson, Dejah, D'Oria, Mario, Rio-Sola, Lurdes del, Ajalat, Mark, Chau, Marvin, Talutis, Stephanie D., Woo, Karen, Wohlauer, Max V., Yi, JeniannA, Eagle, Kim A., Bowman, Marion A. Hofmann, MS, Eva Kline-Rogers, Kim, Hyein, Henoud, Claudine, Damrauer, Scott, Krol, Emilia, Afifi, Rana O., Cecchi, Alana C., Drake, Madeline, Estrera, Anthony, Hebert, Avery M, Milewicz, Dianna M., Prakash, Siddharth K., Roberts, Aaron W., Sandhu, Harleen, Smith-Washington, Akili, Tanaka, Akiko, Watson, Jacob, Ahmad, Myra, Albright, Catherine M., Burke, Christopher R., Byers, Peter H., Kennedy, L'Oreal, Lawrence, Sarah O., Lee, Jenney R., Medina, Jonathan, Nishath, Thamanna, Pham, Julie, Segal, Courtney, Shalhub, Sherene, Soto, Michael, Catalan, Linell, Patterson, Megan, Ilonzo, Nicole
Published in Seminars in vascular surgery (01.03.2022)
Published in Seminars in vascular surgery (01.03.2022)
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Journal Article
Lived experiences of people with or at risk for aortic dissection: A qualitative assessment
Lee, Jenney R., Segal, Courtney, Howitt, Jake, Case, Melanie, Cotter, Novelett, Soderlund, Timo, Trotter, Debra, Lawrence, Sarah O., Shalhub, Sherene, Case, Melanie, Cotter, Novelett E., David, Carmen C., Fasano, Mark, Goldenberg, Richard, Howitt, Jake, Söderlund, Timo T., Trotter, Debra, Rabin, Asaf, Boehler-Tatman, Mattie, Russo, Melissa L., Drudi, Laura Marie, Marks, Laura L., Yousif, Maisoon D., Hoffstaetter, Tabea, Taubenfeld, Ella, Vemulapalli, Sreekanth, Campos, Chrisanne S., Rusche, Lindsey, Pena, Robert C.F., Mussa, Firas F., MacCarrick, Gretchen, Goldsborough, Earl, Samuel, Christeen, Xu, Lillian, Mouawad, Nicolas J., Yassa, Eanas S., Teng, Xiaoyi, Politano, Amani, Teindl, Jesse, Bloom, Lara, Gluck, Rebecca, O'Neal, Meredith Ford, Grima, Josephine, Masciale, Eileen, Ota, Takeyoshi, Wright, Katelyn, Hakim, Alan J., Owens, Gareth, Arnaoutakis, George J., Judelson, Dejah, D'Oria, Mario, Rio-Sola, Lurdes del, Ajalat, Mark, Chau, Marvin, Talutis, Stephanie D., Woo, Karen, Wohlauer, Max V., Yi, JeniannA, Eagle, Kim A., Bowman, Marion A. Hofmann, MS, Eva Kline-Rogers, Kim, Hyein, Henoud, Claudine, Damrauer, Scott, Krol, Emilia, Afifi, Rana O., Cecchi, Alana C., Drake, Madeline, Estrera, Anthony, Hebert, Avery M, Milewicz, Dianna M., Prakash, Siddharth K., Roberts, Aaron W., Sandhu, Harleen, Smith-Washington, Akili, Tanaka, Akiko, Watson, Jacob, Ahmad, Myra, Albright, Catherine M., Burke, Christopher R., Byers, Peter H., Kennedy, L'Oreal, Lawrence, Sarah O., Lee, Jenney R., Medina, Jonathan, Nishath, Thamanna, Pham, Julie, Segal, Courtney, Shalhub, Sherene, Soto, Michael, Catalan, Linell, Patterson, Megan, Ilonzo, Nicole
Published in Seminars in vascular surgery (01.03.2022)
Published in Seminars in vascular surgery (01.03.2022)
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Journal Article