Diagnostic Validation for Participants in the Washington State Parkinson Disease Registry
Background. The Washington State Parkinson Disease Registry (WPDR) was created to facilitate recruitment for Parkinson’s disease (PD) research studies conducted in the Pacific Northwest. The success of registries that rely on self-report is dependent on the accuracy of the information provided by pa...
Saved in:
| Main Authors: | , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Wiley
2018-01-01
|
| Series: | Parkinson's Disease |
| Online Access: | http://dx.doi.org/10.1155/2018/3719578 |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1832545994516987904 |
|---|---|
| author | Hojoong M. Kim James B. Leverenz Daniel J. Burdick Sindhu Srivatsal Jennifer Pate Shu-Ching Hu Steven P. Millard Marie Y. Davis Ali Samii Cyrus P. Zabetian |
| author_facet | Hojoong M. Kim James B. Leverenz Daniel J. Burdick Sindhu Srivatsal Jennifer Pate Shu-Ching Hu Steven P. Millard Marie Y. Davis Ali Samii Cyrus P. Zabetian |
| author_sort | Hojoong M. Kim |
| collection | DOAJ |
| description | Background. The Washington State Parkinson Disease Registry (WPDR) was created to facilitate recruitment for Parkinson’s disease (PD) research studies conducted in the Pacific Northwest. The success of registries that rely on self-report is dependent on the accuracy of the information provided by participants, particularly diagnosis. Objective and Methods. Our goal was to assess diagnostic accuracy within the WPDR cohort. We randomly selected and attempted to contact 168 of the 1,278 actively enrolled WPDR participants. Those who responded were invited to undergo an interview and neurological examination performed by a PD specialist. If an in-person assessment was not possible, we sought information collected during participation in prior research studies or from review of medical records. A diagnosis was considered “validated” if the individual met UK Parkinson’s Disease Society Brain Bank (UKBB) clinical diagnostic criteria for PD. Results. Data were ascertained for 106 participants; 77 underwent an in-person assessment, 21 had data available from a prior research study, and 8 provided access to medical records. Diagnostic accuracy within the overall sample was 93.4% (95% confidence interval (86.4%, 97.1%)). Seven patients did not fulfill UKBB criteria for the following reasons: early severe autonomic involvement (n=3), history of neuroleptic treatment (n=1), presence of the Babinski sign (n=1), or insufficient supportive criteria (n=2). Conclusions. Our results indicate that studies which use the WPDR for recruitment will rarely encounter patients who are misdiagnosed. This further supports the utility of the WPDR as an effective recruitment tool for PD research in the Pacific Northwest. |
| format | Article |
| id | doaj-art-70cfbaf35a1d4fbe8eae4a01fd067858 |
| institution | Kabale University |
| issn | 2090-8083 2042-0080 |
| language | English |
| publishDate | 2018-01-01 |
| publisher | Wiley |
| record_format | Article |
| series | Parkinson's Disease |
| spelling | doaj-art-70cfbaf35a1d4fbe8eae4a01fd0678582025-02-03T07:24:04ZengWileyParkinson's Disease2090-80832042-00802018-01-01201810.1155/2018/37195783719578Diagnostic Validation for Participants in the Washington State Parkinson Disease RegistryHojoong M. Kim0James B. Leverenz1Daniel J. Burdick2Sindhu Srivatsal3Jennifer Pate4Shu-Ching Hu5Steven P. Millard6Marie Y. Davis7Ali Samii8Cyrus P. Zabetian9Veterans Affairs Puget Sound Health Care System, Seattle, WA, USALou Ruvo Center for Brain Health, Cleveland Clinic, Cleveland, OH, USABooth Gardner Parkinson’s Care Center, EvergreenHealth Medical Center, Kirkland, WA, USAVirginia Mason Medical Center, Seattle, WA, USAVeterans Affairs Puget Sound Health Care System, Seattle, WA, USAVeterans Affairs Puget Sound Health Care System, Seattle, WA, USAVeterans Affairs Puget Sound Health Care System, Seattle, WA, USAVeterans Affairs Puget Sound Health Care System, Seattle, WA, USAVeterans Affairs Puget Sound Health Care System, Seattle, WA, USAVeterans Affairs Puget Sound Health Care System, Seattle, WA, USABackground. The Washington State Parkinson Disease Registry (WPDR) was created to facilitate recruitment for Parkinson’s disease (PD) research studies conducted in the Pacific Northwest. The success of registries that rely on self-report is dependent on the accuracy of the information provided by participants, particularly diagnosis. Objective and Methods. Our goal was to assess diagnostic accuracy within the WPDR cohort. We randomly selected and attempted to contact 168 of the 1,278 actively enrolled WPDR participants. Those who responded were invited to undergo an interview and neurological examination performed by a PD specialist. If an in-person assessment was not possible, we sought information collected during participation in prior research studies or from review of medical records. A diagnosis was considered “validated” if the individual met UK Parkinson’s Disease Society Brain Bank (UKBB) clinical diagnostic criteria for PD. Results. Data were ascertained for 106 participants; 77 underwent an in-person assessment, 21 had data available from a prior research study, and 8 provided access to medical records. Diagnostic accuracy within the overall sample was 93.4% (95% confidence interval (86.4%, 97.1%)). Seven patients did not fulfill UKBB criteria for the following reasons: early severe autonomic involvement (n=3), history of neuroleptic treatment (n=1), presence of the Babinski sign (n=1), or insufficient supportive criteria (n=2). Conclusions. Our results indicate that studies which use the WPDR for recruitment will rarely encounter patients who are misdiagnosed. This further supports the utility of the WPDR as an effective recruitment tool for PD research in the Pacific Northwest.http://dx.doi.org/10.1155/2018/3719578 |
| spellingShingle | Hojoong M. Kim James B. Leverenz Daniel J. Burdick Sindhu Srivatsal Jennifer Pate Shu-Ching Hu Steven P. Millard Marie Y. Davis Ali Samii Cyrus P. Zabetian Diagnostic Validation for Participants in the Washington State Parkinson Disease Registry Parkinson's Disease |
| title | Diagnostic Validation for Participants in the Washington State Parkinson Disease Registry |
| title_full | Diagnostic Validation for Participants in the Washington State Parkinson Disease Registry |
| title_fullStr | Diagnostic Validation for Participants in the Washington State Parkinson Disease Registry |
| title_full_unstemmed | Diagnostic Validation for Participants in the Washington State Parkinson Disease Registry |
| title_short | Diagnostic Validation for Participants in the Washington State Parkinson Disease Registry |
| title_sort | diagnostic validation for participants in the washington state parkinson disease registry |
| url | http://dx.doi.org/10.1155/2018/3719578 |
| work_keys_str_mv | AT hojoongmkim diagnosticvalidationforparticipantsinthewashingtonstateparkinsondiseaseregistry AT jamesbleverenz diagnosticvalidationforparticipantsinthewashingtonstateparkinsondiseaseregistry AT danieljburdick diagnosticvalidationforparticipantsinthewashingtonstateparkinsondiseaseregistry AT sindhusrivatsal diagnosticvalidationforparticipantsinthewashingtonstateparkinsondiseaseregistry AT jenniferpate diagnosticvalidationforparticipantsinthewashingtonstateparkinsondiseaseregistry AT shuchinghu diagnosticvalidationforparticipantsinthewashingtonstateparkinsondiseaseregistry AT stevenpmillard diagnosticvalidationforparticipantsinthewashingtonstateparkinsondiseaseregistry AT marieydavis diagnosticvalidationforparticipantsinthewashingtonstateparkinsondiseaseregistry AT alisamii diagnosticvalidationforparticipantsinthewashingtonstateparkinsondiseaseregistry AT cyruspzabetian diagnosticvalidationforparticipantsinthewashingtonstateparkinsondiseaseregistry |