(Q26822274)

25 June 2017

1 reference

A systematic review of approaches for engaging patients for research on rare diseases (English)

1 reference

25 June 2017

0 references

1 reference

Mohammad Hassan Murad

3

0 references

author name string

Victoria Szydlowski

2

1 reference

25 June 2017

Stanley Ip

4

1 reference

25 June 2017

Zhen Wang

5

1 reference

25 June 2017

Rachael Fleurence

7

1 reference

25 June 2017

Laura P Forsythe

1

1 reference

25 June 2017

Tarig A Elraiyah

6

1 reference

25 June 2017

David H Hickam

8

1 reference

25 June 2017

language of work or name

1 reference

1 August 2014

1 reference

Journal of General Internal Medicine

25 June 2017

1 reference

25 June 2017

29 Suppl 3

1 reference

25 June 2017

S3

0 references

page(s)

S788-800

1 reference

https://scigraph.springernature.com/pub.10.1007/s11606-014-2895-9

25 June 2017

0 references

cites work

Guidance in social and ethical issues related to clinical, diagnostic care and novel therapies for hereditary neuromuscular rare diseases: "translating" the translational

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4124116

Patient engagement in research: a systematic review

7 April 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4124116

Patient and service user engagement in research: a systematic review and synthesized framework.

28 September 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4124116

Methodology of clinical research in rare diseases: development of a research program in juvenile neuronal ceroid lipofuscinosis (JNCL) via creation of a patient registry and collaboration with patient advocates

28 September 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4124116

Involvement of patient organisations in research and development of orphan drugs for rare diseases in europe

28 September 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4124116

Cross-cultural adaptation of the CHO-KLAT for boys with hemophilia in rural and urban China

28 September 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4124116

Li-Fraumeni syndrome: report of a clinical research workshop and creation of a research consortium

28 September 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4124116

Key outcomes from stakeholder workshops at a symposium to inform the development of an Australian national plan for rare diseases

28 September 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4124116

Which outcomes should we measure in vitiligo? Results of a systematic review and a survey among patients and clinicians on outcomes in vitiligo trials.

28 September 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4124116

A new taxonomy for stakeholder engagement in patient-centered outcomes research

28 September 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4124116

Motivations of patients with pulmonary arterial hypertension to participate in randomized clinical trials

28 September 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4124116

Looking back in time: conducting a cohort study of the long-term effects of treatment of adolescent tall girls with synthetic hormones

28 September 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4124116

Consulting parents about the design of a randomized controlled trial of osteopathy for children with cerebral palsy.

28 September 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4124116

Establishing a consortium for the study of rare diseases: The Urea Cycle Disorders Consortium

28 September 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4124116

Establishment of a Community Advisory Board (CAB) for tuberculosis control and research in the Inanda, Ntuzuma and KwaMashu (INK) area of KwaZulu-Natal, South Africa

28 September 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4124116

Patient involvement in health research: a contribution to a systematic review on the effectiveness of treatments for degenerative ataxias

28 September 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4124116

Patient-important outcomes in registered diabetes trials

28 September 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4124116

The use of the internet in data assimilation in rare diseases

28 September 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4124116

An integrated approach to consumer representation and involvement in a multicentre randomized controlled trial

28 September 2017

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=4124116

The political empowerment of rare disease patient advocates both at EU and national level.

28 September 2017

1 reference

https://api.crossref.org/works/10.1007%2FS11606-014-2895-9

How disease advocacy organizations participate in clinical research: a survey of genetic organizations

21 January 2018

1 reference

https://api.crossref.org/works/10.1007%2FS11606-014-2895-9

Patient and family engagement: a framework for understanding the elements and developing interventions and policies.

21 January 2018

1 reference

https://api.crossref.org/works/10.1007%2FS11606-014-2895-9

The art of age-appropriate care: reflecting on a conceptual model of the cancer experience for teenagers and young adults

21 January 2018

1 reference

https://api.crossref.org/works/10.1007%2FS11606-014-2895-9

Research priorities of patients with neuromuscular disease.

21 January 2018

1 reference

https://api.crossref.org/works/10.1007%2FS11606-014-2895-9

Public attitudes regarding a pilot study of newborn screening for spinal muscular atrophy.

21 January 2018

1 reference

https://api.crossref.org/works/10.1007%2FS11606-014-2895-9

The role of patient advocacy organisations in neuromuscular disease R&D--The case of the Dutch neuromuscular disease association VSN.

21 January 2018

1 reference

https://api.crossref.org/works/10.1007%2FS11606-014-2895-9

Practical aspects of recruitment and retention in clinical trials of rare genetic diseases: the phenylketonuria (PKU) experience

21 January 2018

1 reference

https://api.crossref.org/works/10.1007%2FS11606-014-2895-9

Unresolved tensions in consumer engagement in CER: a US research perspective

21 January 2018

1 reference

https://api.crossref.org/works/10.1007%2FS11606-014-2895-9

Continuous patient engagement in comparative effectiveness research.

21 January 2018

1 reference

https://api.crossref.org/works/10.1007%2FS11606-014-2895-9

The experiential knowledge of patients: a new resource for biomedical research?

21 January 2018

1 reference

PubMed

https://pubmed.ncbi.nlm.nih.gov/25047393

inferred from PubMed ID database lookup

12 December 2020

based on heuristic

Genetics. Patient advocate named co-inventor on patent for the PXE disease gene

1 reference

PubMed

https://pubmed.ncbi.nlm.nih.gov/25047393

inferred from PubMed ID database lookup

12 December 2020

based on heuristic

Fibromyalgia syndrome

1 reference

PubMed

https://pubmed.ncbi.nlm.nih.gov/25047393

inferred from PubMed ID database lookup

12 December 2020

based on heuristic

Identifiers

DOI

10.1007/S11606-014-2895-9

1 reference

Dimensions Publication ID

25 June 2017

1010535849

0 references

OpenCitations bibliographic resource ID

1551837

1 reference

Consolidated OpenCitations Corpus – April 2017

OpenCitations bibliographic resource ID

1 reference

1 reference