Availability of Therapies and Services for Parkinson's Disease in Africa: A Continent‐Wide Survey

Hamid, Eman; Ayele, Biniyam A.; Massi, Daniel Gams; Sassi, Samia Ben; Tibar, Houyam; Djonga, Emmanuel Epenge; El-Sadig, Sarah Misbah; Khedoud, Wahiba Amer El; Razafimahefa, Julien; Kouame-Assouan, Ange Eric; Ben-Adji, Djibrilla; Lengané, Yilédoma Thierry Modeste; Musubire, Abdu K; Mohamed, Muhyadin Hassan; Phiri, Tiwonge Elisa; Nestor, Nsengiyumva; Alwahchi, Wael Abdulgader; Neshuku, Saara Ndinelago; Ocampo, Cassandra; Sakadi, Foksouna; Maidal, Moulid Ali; Ngwende, Gift; Hooker, Juzor; Okeng'o, Kigocha; Charway‐Felli, Augustina; Atadzhanov, Masharip; Carr, Jonathan; Okubadejo, Njideka; Shalash, Ali

doi:10.1002/mds.28669

Cited by 28 publications

(74 citation statements)

References 22 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Capacity building in countries with a predominance of URPs is another crucial step to guarantee long-term studies and build autonomy and a diverse pool of researchers with expertise in genetics research. [23][24][25] Merely including the names of young investigators as coauthors in the middle of multiauthored articles is insufficient; a clear career development strategy for junior researchers should be implemented with a plan for them to produce first-author or senior-author publications in the future. As observed in our results, there is a surplus of opportunities for promoting sustainable diversity in genomics studies through the empowerment of local researchers and authorities.…”

Section: Discussionmentioning

confidence: 99%

“…In addition, radical transparency should be implemented throughout all aspects of research, including goals, funding, governance, and publication policies. Capacity building in countries with a predominance of URPs is another crucial step to guarantee long‐term studies and build autonomy and a diverse pool of researchers with expertise in genetics research 23‐25 . Merely including the names of young investigators as coauthors in the middle of multiauthored articles is insufficient; a clear career development strategy for junior researchers should be implemented with a plan for them to produce first‐author or senior‐author publications in the future.…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Underrepresented Populations in Parkinson's Genetics Research: Current Landscape and Future Directions

et al. 2022

Self Cite

View full text Add to dashboard Cite

Background Human genetics research lacks diversity; over 80% of genome‐wide association studies have been conducted on individuals of European ancestry. In addition to limiting insights regarding disease mechanisms, disproportionate representation can create disparities preventing equitable implementation of personalized medicine. Objective This systematic review provides an overview of research involving Parkinson's disease (PD) genetics in underrepresented populations (URP) and sets a baseline to measure the future impact of current efforts in those populations. Methods We searched PubMed and EMBASE until October 2021 using search strings for “PD,” “genetics,” the main “URP,” and and the countries in Latin America, Caribbean, Africa, Asia, and Oceania (excluding Australia and New Zealand). Inclusion criteria were original studies, written in English, reporting genetic results on PD from non‐European populations. Two levels of independent reviewers identified and extracted information. Results We observed imbalances in PD genetic studies among URPs. Asian participants from Greater China were described in the majority of the articles published (57%), but other populations were less well studied; for example, Blacks were represented in just 4.0% of the publications. Also, although idiopathic PD was more studied than monogenic forms of the disease, most studies analyzed a limited number of genetic variants. We identified just nine studies using a genome‐wide approach published up to 2021, including URPs. Conclusion This review provides insight into the significant lack of population diversity in PD research highlighting the immediate need for better representation. The Global Parkinson's Genetics Program (GP2) and similar initiatives aim to impact research in URPs, and the early metrics presented here can be used to measure progress in the field of PD genetics in the future. © 2022 International Parkinson and Movement Disorder Society.

show abstract

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Underrepresented Populations in Parkinson's Genetics Research: Current Landscape and Future Directions

et al. 2022

Self Cite

View full text Add to dashboard Cite

show abstract

“…In some countries, not all resources are available (ie, invasive PD treatment, botulinum toxin, and single-photon emission computed tomography [SPECT] imaging), and therefore, a fellowship might choose applicable milestones accordingly. 18 There are other clinical skills not captured in these milestones; they are not exhaustive. For example, the group considered the inclusion of intraoperative monitoring skills for movement disorder functional neurosurgery.…”

Section: Discussionmentioning

confidence: 99%

Viewpoint on Milestones for Fellowship Training in Movement Disorders

et al. 2022

Self Cite

View full text Add to dashboard Cite

There is a demand for quality Parkinson's Disease (PD) care globally and competent movement disorders specialists are needed. [1][2][3] Fellowship training provides neurologists (residency graduates) education in the diagnosis and management of movement disorders. Graduates may provide improved care for patients with movement disorders, serve as a referral for colleagues, become educators or leaders in the field, and may have scholarly experience during training that prepares them to contribute to the understanding of movement disorders. In North America, there are at least 88 fellowship positions in 2022, compared to 43 positions in 2012. 4,5 Detailed data outlining the landscape of movement disorders training across global regions is unavailable, but

show abstract

“…14 Government expenditure on health is inadequate in all resourcelimited countries, with patients relying heavily on out-of-pocket expenses even for basic health care. 9 Governmental insurance does not cover most PD therapies across many countries. For example, insurance coverage of levodopa was only partial in 44% and not covered in 16% of 28 African countries responding to surveys.…”

Section: Disease Burdenmentioning

confidence: 99%

“…This has been reinforced by a recent study demonstrating the consistent scarcity and unaffordability of PD therapies and resources in most African countries. 9 Likewise, in low-income countries, the total neurological workforce is 0.1 per 100 000 population compared with a global median of 3 per 100 000 population. 8 A strong recognition of the growing effect, high numbers, and contrasting lack of resources and treatment for people with PD needs to be addressed, particularly in LMICs.…”

mentioning

confidence: 99%

Six Action Steps to Address Global Disparities in Parkinson Disease

et al. 2022

Self Cite

View full text Add to dashboard Cite

study conducted between 1990 and 2016, based on a global study of 195 countries and territories, identified Parkinson disease (PD) as the fastest growing neurological disorder when measured using death and disability. Most people affected by PD live in low-and middle-income countries (LMICs) and experience large inequalities in access to neurological care and essential medicines. This Special Communication describes 6 actions steps that are urgently needed to address global disparities in PD.OBSERVATIONS The adoption by the 73rd World Health Assembly (WHA) of resolution 73.10 to develop an intersectoral global action plan on epilepsy and other neurological disorders in consultation with member states was the stimulus to coordinate efforts and leverage momentum to advance the agenda of neurological conditions, such as PD. In April 2021, the Brain Health Unit at the World Health Organization convened a multidisciplinary, sex-balanced, international consultation workshop, which identified 6 workable avenues for action within the domains of disease burden; advocacy and awareness; prevention and risk reduction; diagnosis, treatment, and care; caregiver support; and research. CONCLUSIONS AND RELEVANCEThe dramatic increase of PD cases in many world regions and the potential costs of PD-associated treatment will need to be addressed to prevent possible health service strain. Across the board, governments, multilateral agencies, donors, public health organizations, and health care professionals constitute potential stakeholders who are urged to make this a priority.

show abstract

Availability of Therapies and Services for Parkinson's Disease in Africa: A Continent‐Wide Survey

Abstract: A BS TRACT: Background: The growing burden of Parkinson's disease (PD) in Africa necessitates the identification of available therapies and services to improve patient care.

Cited by 28 publications

References 22 publications

Underrepresented Populations in Parkinson's Genetics Research: Current Landscape and Future Directions

Underrepresented Populations in Parkinson's Genetics Research: Current Landscape and Future Directions

Viewpoint on Milestones for Fellowship Training in Movement Disorders

Six Action Steps to Address Global Disparities in Parkinson Disease

Contact Info

Product

Resources

About