patientneeds.eu

The patient's journey

The journey to a diagnosis from the patients' perspective. Information to you who are a parent of a child with a rare medical condition who is interested in taking part in this interview study. What does participation involve? The interview aims to uncover the journey from the first symptom to the final diagnosis. The research related to four qestions:. The first symptoms you identified. Your first contact with health services. The journey to the right diagnosis. Supervisor: John Chaplin Psychologist and...

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The patient's journey | patientneeds.eu Reviews

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The journey to a diagnosis from the patients' perspective. Information to you who are a parent of a child with a rare medical condition who is interested in taking part in this interview study. What does participation involve? The interview aims to uncover the journey from the first symptom to the final diagnosis. The research related to four qestions:. The first symptoms you identified. Your first contact with health services. The journey to the right diagnosis. Supervisor: John Chaplin Psychologist and...

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1 the patient's journey

2 respect project

3 promis

4 qolissy

5 narqol/sleep

6 social media

7 the family’s experience

8 a short summary

9 objective

10 background

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the patient's journey,respect project,promis,qolissy,narqol/sleep,social media,the family’s experience,a short summary,objective,background,john chaplin,email

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The patient's journey | patientneeds.eu Reviews

https://patientneeds.eu

The journey to a diagnosis from the patients' perspective. Information to you who are a parent of a child with a rare medical condition who is interested in taking part in this interview study. What does participation involve? The interview aims to uncover the journey from the first symptom to the final diagnosis. The research related to four qestions:. The first symptoms you identified. Your first contact with health services. The journey to the right diagnosis. Supervisor: John Chaplin Psychologist and...

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patientneeds.eu

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Publications

http://www.patientneeds.eu/publications.html

Or download a PDF copy (15 MB). RESPECT project dissemination meeting presentations (Brussels, 25 May 2011). Overview of the RESPECT project and the paediatric clinical trials landscape. View from the Paediatric Committee of the EMA. Young patients’ and their parents’ experiences of clinical trials. Recruiting children to paediatric clinical trials the view from the clinician. Involving children in decision-making what are their rights? How do families make the decision to participate? 30 Nov - 1 Dec 2011.

2

About the RESPECT project

http://www.patientneeds.eu/overview.html

Xpectations and Need s. Hildren in Clinical T. Studies have shown that over 50% of the medicinal products used in children may not have been tested or authorised for use in this age group. This leaves health care professionals with no alternative but to use medicines "off-label", judging the suitability and the correct dose of these medicines themselves in the absence of paediatric labeling information. This poses significant risks of inefficacy and/or adverse reactions for children. We explored the issu...

3

The RESPECT project

http://www.patientneeds.eu/index.html

Xpectations and Need s. Hildren in Clinical T. The RESPECT project answers the following questions:. How can paediatric patients be better mobilised and empowered? How can they get the clinical outcomes that really matter to them? How can their needs be integrated into clinical trials? Göteborg Pediatric Growth Research Center. Read online (above) or download a PDF copy (15 MB). The DISABKIDS focus group manual.

4

The RESPECT project consortium

http://www.patientneeds.eu/consortium.html

The RESPECT consortium consisted of experts from the fields of clinical research, patient representation, and European paediatric research ethics and regulation. The following experts were partners in the RESPECT project:. University of Gothenburg, Göteborg Pediatric Growth Research Center (GPGRC). The GPGRC is the coordinator of the RESPECT project and has expertise in the fields of patient-reported outcome measures, psychoendocrinology and paediatric clinical trials. The UCHL has expertise in the field...

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Recommendations to stakeholders

http://www.patientneeds.eu/recommendations.html

RESPECT: Main recommendations to stakeholders. A full description and discussion of these recommendations can be found in chapter 9 of the RESPECT book.

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