Rare Disease Research Partnership (RAinDRoP): a collaborative approach to identify research priorities for rare diseases in Ireland [version 2; peer review: 2 approved]
Background: Rare diseases are individually rare, but collectively these conditions are common. Research on rare diseases are currently focused on disease-specific needs rather than a life-course perspective. The Rare Disease Research Partnership (RAinDRoP) was established in 2018 to bring together a...
| Main Authors: | , , , , , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
F1000 Research Ltd
2020-11-01
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| Series: | HRB Open Research |
| Online Access: | https://hrbopenresearch.org/articles/3-13/v2 |
| _version_ | 1818661723732705280 |
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| author | Suja Somanadhan Emma Nicholson Emma Dorris Aoife Brinkley Avril Kennan Eileen Treacy Awan Atif Sean Ennis Vicky McGrath Derick Mitchell Grace O’Sullivan Julie Power Anne Lawlor Paul Harkin Sally Ann Lynch Philip Watt Avril Daly Susie Donnelly Thilo Kroll |
| author_facet | Suja Somanadhan Emma Nicholson Emma Dorris Aoife Brinkley Avril Kennan Eileen Treacy Awan Atif Sean Ennis Vicky McGrath Derick Mitchell Grace O’Sullivan Julie Power Anne Lawlor Paul Harkin Sally Ann Lynch Philip Watt Avril Daly Susie Donnelly Thilo Kroll |
| author_sort | Suja Somanadhan |
| collection | DOAJ |
| description | Background: Rare diseases are individually rare, but collectively these conditions are common. Research on rare diseases are currently focused on disease-specific needs rather than a life-course perspective. The Rare Disease Research Partnership (RAinDRoP) was established in 2018 to bring together a wide variety of diverse voices in the rare disease community in Ireland and form a research partnership. Methods: A participatory multiple phase approach was used to identify research priorities for rare diseases. The research process involved three main phases: Phase I, Public Consultation Survey(PCS); Phase II, Research Prioritisation Workshop (RPW); Phase III, Public Prioritisation Ranking Survey (PRS). The time frame for the entire study was from November 2018 to June 2019. Results: In total, 240 individuals completed the phase I, of which only 96 survey participants provided information on their background, 32% (n=31) self-identified as a person living with a rare disease(s). One thousand and fifteen statements were collected, which reflected issues and shared challenges in rare diseases. MSExcel was used to gain frequencies and percentages. Phase II was focused on three main themes (1) Route to Diagnosis (2) Living with Rare Disease (3) Integrated and Palliative Care. 42 participants engaged at each workshop. Seventy-five individuals completed the phase III prioritisation ranking survey and ranked the top 15 research priorities. The top five priorities were (1)Support at the time of diagnosis, (2) Diagnostic test for rare diseases (3)Education and training (4) Patient voice (5) Data sharing and integration of services for rare diseases. Conclusions: The research priorities identified here for rare diseases were developed jointly in collaboration with patients, families, healthcare professionals and policymakers. So, we encourage researchers, funding bodies and other stakeholders to use this priority list as a guiding document for future research work to improve the health and lives of people living with rare diseases. |
| first_indexed | 2024-12-17T04:49:36Z |
| format | Article |
| id | doaj.art-e2283184ff8e4267ac1b5bd91ac24ffc |
| institution | Directory Open Access Journal |
| issn | 2515-4826 |
| language | English |
| last_indexed | 2024-12-17T04:49:36Z |
| publishDate | 2020-11-01 |
| publisher | F1000 Research Ltd |
| record_format | Article |
| series | HRB Open Research |
| spelling | doaj.art-e2283184ff8e4267ac1b5bd91ac24ffc2022-12-21T22:02:57ZengF1000 Research LtdHRB Open Research2515-48262020-11-01310.12688/hrbopenres.13017.214298Rare Disease Research Partnership (RAinDRoP): a collaborative approach to identify research priorities for rare diseases in Ireland [version 2; peer review: 2 approved]Suja Somanadhan0Emma Nicholson1Emma Dorris2Aoife Brinkley3Avril Kennan4Eileen Treacy5Awan Atif6Sean Ennis7Vicky McGrath8Derick Mitchell9Grace O’Sullivan10Julie Power11Anne Lawlor12Paul Harkin13Sally Ann Lynch14Philip Watt15Avril Daly16Susie Donnelly17Thilo Kroll18UCD School of Nursing, Midwifery and Health Systems, University College Dublin, Belfield, County Dublin, D04 V1W8, IrelandUCD School of Nursing, Midwifery and Health Systems, University College Dublin, Belfield, County Dublin, D04 V1W8, IrelandUCD School of Medicine, University College Dublin, Belfield, County Dublin, D04 V1W8, IrelandChildren’s Health Ireland (CHI) Ireland, Children’s Health Ireland (CHI) at Connolly, Blanchardstown, Dublin, D01 YC67, IrelandHealth Research Charities Ireland / HRCI, 12 Camden Row, Dublin, D08 R9CN, IrelandUCD School of Medicine, University College Dublin, Belfield, County Dublin, D04 V1W8, IrelandChildren’s Health Ireland (CHI) at Temple Street, Temple Street, Dublin, D01 YC67, IrelandUCD School of Medicine, University College Dublin, Belfield, County Dublin, D04 V1W8, IrelandRare Diseases Ireland, Dublin, IrelandIPPOSI - The Irish Platform for Patient Organisations, Science and Industry, Dublin 2, Dublin, D02 XE80, IrelandNational Clinical Programme for Rare Diseases, Royal College of Physicians of Ireland, Dublin-2, IrelandNIRDP- Northern Ireland Rare Disease Partnership, 2 William Street, Northern Ireland, BT23 4AH, UK22Q11 Ireland, North Brunswick Street, Dublin, IrelandUCD School of Medicine, University College Dublin, Belfield, County Dublin, D04 V1W8, IrelandUCD School of Medicine, University College Dublin, Belfield, County Dublin, D04 V1W8, IrelandRare Disease Task force, CF House, 24 Lower Rathmines Road, Dublin 6, IrelandEuropean Organisation for Rare Diseases (EURODIS), Paris, 75014, FranceUCD School of Nursing, Midwifery and Health Systems, University College Dublin, Belfield, County Dublin, D04 V1W8, IrelandUCD School of Nursing, Midwifery and Health Systems, University College Dublin, Belfield, County Dublin, D04 V1W8, IrelandBackground: Rare diseases are individually rare, but collectively these conditions are common. Research on rare diseases are currently focused on disease-specific needs rather than a life-course perspective. The Rare Disease Research Partnership (RAinDRoP) was established in 2018 to bring together a wide variety of diverse voices in the rare disease community in Ireland and form a research partnership. Methods: A participatory multiple phase approach was used to identify research priorities for rare diseases. The research process involved three main phases: Phase I, Public Consultation Survey(PCS); Phase II, Research Prioritisation Workshop (RPW); Phase III, Public Prioritisation Ranking Survey (PRS). The time frame for the entire study was from November 2018 to June 2019. Results: In total, 240 individuals completed the phase I, of which only 96 survey participants provided information on their background, 32% (n=31) self-identified as a person living with a rare disease(s). One thousand and fifteen statements were collected, which reflected issues and shared challenges in rare diseases. MSExcel was used to gain frequencies and percentages. Phase II was focused on three main themes (1) Route to Diagnosis (2) Living with Rare Disease (3) Integrated and Palliative Care. 42 participants engaged at each workshop. Seventy-five individuals completed the phase III prioritisation ranking survey and ranked the top 15 research priorities. The top five priorities were (1)Support at the time of diagnosis, (2) Diagnostic test for rare diseases (3)Education and training (4) Patient voice (5) Data sharing and integration of services for rare diseases. Conclusions: The research priorities identified here for rare diseases were developed jointly in collaboration with patients, families, healthcare professionals and policymakers. So, we encourage researchers, funding bodies and other stakeholders to use this priority list as a guiding document for future research work to improve the health and lives of people living with rare diseases.https://hrbopenresearch.org/articles/3-13/v2 |
| spellingShingle | Suja Somanadhan Emma Nicholson Emma Dorris Aoife Brinkley Avril Kennan Eileen Treacy Awan Atif Sean Ennis Vicky McGrath Derick Mitchell Grace O’Sullivan Julie Power Anne Lawlor Paul Harkin Sally Ann Lynch Philip Watt Avril Daly Susie Donnelly Thilo Kroll Rare Disease Research Partnership (RAinDRoP): a collaborative approach to identify research priorities for rare diseases in Ireland [version 2; peer review: 2 approved] HRB Open Research |
| title | Rare Disease Research Partnership (RAinDRoP): a collaborative approach to identify research priorities for rare diseases in Ireland [version 2; peer review: 2 approved] |
| title_full | Rare Disease Research Partnership (RAinDRoP): a collaborative approach to identify research priorities for rare diseases in Ireland [version 2; peer review: 2 approved] |
| title_fullStr | Rare Disease Research Partnership (RAinDRoP): a collaborative approach to identify research priorities for rare diseases in Ireland [version 2; peer review: 2 approved] |
| title_full_unstemmed | Rare Disease Research Partnership (RAinDRoP): a collaborative approach to identify research priorities for rare diseases in Ireland [version 2; peer review: 2 approved] |
| title_short | Rare Disease Research Partnership (RAinDRoP): a collaborative approach to identify research priorities for rare diseases in Ireland [version 2; peer review: 2 approved] |
| title_sort | rare disease research partnership raindrop a collaborative approach to identify research priorities for rare diseases in ireland version 2 peer review 2 approved |
| url | https://hrbopenresearch.org/articles/3-13/v2 |
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