2013
DOI: 10.1097/jdn.0b013e31827d9ed5
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Pachyonychia Congenita Project

Abstract: A rare disease like pachyonychia congenita (PC) poses barriers to the patient, medical professional, and scientist. The patient has challenges connecting to information, the medical professional has challenges connecting to patient experience, and the scientist has challenges connecting to a sufficient number of patients to do meaningful research. Recent collaboration between these groups has transformed our understanding of PC and its symptoms and method of diagnosis. PC Project is at the center of this colla… Show more

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Cited by 6 publications
(14 citation statements)
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“…Eleven studies used qualitative or survey methods to obtain input from patients, 4,7,[18][19][20][21][22][23][24][25][26] and 17 studies were narrative reports describing one group's experiences with engagement. [27][28][29][30][31][32][33][34][35][36][37][38][39][40][41][42][43] The remaining seven studies were descriptions of specific initiatives reported on websites [44][45][46][47][48][49][50] ( Table 1 and Table 2). The studies were mostly conducted in North America and Europe, and most focused on a specific rare disease rather than rare diseases in general.…”
Section: Resultsmentioning
confidence: 99%
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“…Eleven studies used qualitative or survey methods to obtain input from patients, 4,7,[18][19][20][21][22][23][24][25][26] and 17 studies were narrative reports describing one group's experiences with engagement. [27][28][29][30][31][32][33][34][35][36][37][38][39][40][41][42][43] The remaining seven studies were descriptions of specific initiatives reported on websites [44][45][46][47][48][49][50] ( Table 1 and Table 2). The studies were mostly conducted in North America and Europe, and most focused on a specific rare disease rather than rare diseases in general.…”
Section: Resultsmentioning
confidence: 99%
“…cians. 20,38,39,47,49 Seven studies were classified as sufficiently descriptive 7,18,19,[23][24][25][26] The purposes of engagement included identifying patient-centered research topics or agendas, 19,23,29,36,39 identifying outcomes important to patients or developing measures relevant to patients' needs, 7,19,20,23,25,26 increasing recruitment or enrollment through development of patient-centered study designs, 4,18,21,24,27,30,31,41 and incorporating the patient perspective into study design 19,25,35,39,40 (Table 2, Table 3). Patients and other stakeholders were most commonly engaged in the preparatory stage (n= 19 for agenda setting) 4, 7, 19, 20, 23, 25, 28, 29, 32, 35, 36, 39- (Table 4 [online]).…”
Section: Resultsmentioning
confidence: 99%
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