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PubPharm (98)
1
Health Services Interventions to Improve the Quality of Care in Rare Disease: A Scoping Review
enthalten in:
bioRxiv.org
| 2024
von
Chou, C.
|
Wiredu, S.
|
Imhof, L.
| +4
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2
Recommendations for assessing appearance concerns related to plexiform and cutaneous neurofibromas in neurofibromatosis 1 clinical trials
enthalten in:
Clinical trials (London, England)
| 2024
von
Merker, V.
|
Thompson, H.
|
Wolters, P.
| +12
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3
Perspectives of adults with neurofibromatosis regarding the design of psychosocial trials : Results from an anonymous online survey
enthalten in:
Clinical trials (London, England)
| 2024
von
Wolters, P.
|
Ghriwati, N.
|
Baker, M.
| +10
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4
Advancing neurofibromatosis and schwannomatosis clinical trial design : Consensus recommendations from the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration
enthalten in:
Clinical trials (London, England)
| 2024
von
Merker, V.
|
Gross, A.
|
Widemann, B.
| +1
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5
Understanding Barriers to Diagnosis in a Rare, Genetic Disease: Delays and Errors in Diagnosing Schwannomatosis
enthalten in:
bioRxiv.org
| 2023
von
Merker, V.
|
Slobogean, B.
|
Jordan, J.
| +6
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6
Views on the impact of the COVID-19 pandemic on health in people with Down syndrome from diverse backgrounds
enthalten in:
American journal of medical genetics. Part A
| 2023
von
Santoro, S.
|
Baker, S.
|
Blake, J.
| +21
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7
Indicators of health in Down syndrome : A virtual focus group study with patients and their parents
enthalten in:
Journal of applied research in intellectual disabilities : JARID
| 2023
von
Santoro, S.
|
Cabrera, M.
|
Haugen, K.
| +2
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8
Ten-Year Follow-up of Internal Neurofibroma Growth Behavior in Adult Patients With Neurofibromatosis Type 1 Using Whole-Body MRI
enthalten in:
Neurology
| 2023
von
Ly, K.
|
Merker, V.
|
Cai, W.
| +11
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9
Views on the impact of the COVID‐19 pandemic on health in people with Down syndrome from diverse backgrounds
enthalten in:
American Journal of Medical Genetics Part C: Seminars in Medical Genetics
| 2023
von
Santoro, S.
|
Baker, S.
|
Blake, J.
| +21
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10
Awareness and Agreement with Neurofibromatosis Care Guidelines among Neurofibromatosis Specialists
enthalten in:
bioRxiv.org
| 2022
von
Merker, V.
|
Knight, P.
|
Radtke, H.
| +4
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98
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Zeitschriftentitel
24
Journal of neuro-oncology
11
Neurology
5
American journal of medical genetics. Part A
5
Orphanet journal of rare diseases
4
Cancer chemotherapy and pharmacology
4
Journal of general internal medicine
4
Otology & neurotology : official publication of...
4
Skeletal radiology
3
American Journal of Medical Genetics Part C: Se...
3
BMC health services research
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Clinical trials (London, England)
3
bioRxiv.org
2
Clinical biochemistry
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Fertility and sterility
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Genetics in medicine : official journal of the ...
2
Health services research
2
PloS one
1
American journal of obstetrics & gynecology
1
American journal of obstetrics and gynecology
1
Clinical nuclear medicine
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Thema
47
Journal Article
20
Neurofibromatosis
20
Research Support, Non-U.S. Gov't
15
Research Support, U.S. Gov't, Non-P.H.S.
12
Research Support, N.I.H., Extramural
11
Schwannomatosis
10
Neurofibromatosis 1
9
Neurofibromatosis 2
8
Bevacizumab
7
Rare diseases
6
Quality of life
6
Research Support, N.I.H., Intramural
5
2S9ZZM9Q9V
4
Angiogenesis Inhibitors
4
Antibodies, Monoclonal, Humanized
4
COVID-19
4
Health literacy
4
Measurement
4
Medical visits
4
PROMIS
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Erscheinungszeitraum
32
2020-
66
2010-2019
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